Since launching, the Advocacy Exchange has engaged global and local advocacy organizations through live sessions covering a variety of topics – shaped by participant feedback – and made possible by the passionate advocates, patients, and healthcare professionals who have joined us as presenters. Below, you can learn more about our esteemed speakers.
December 9th, 2021
The Power of Advocacy: Lessons Learned from HIV Advocates
Jim Howley
Senior Director and Hematology Lead, Patient Advocacy, Bristol Myers Squibb
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Jim Howley
Senior Director and Hematology Lead, Patient Advocacy, Bristol Myers Squibb
Jim Howley is one of the original Advocacy professionals in the industry beginning during the early years of HIV joining industry after being an active member of ACT Up and realizing the power of collaboration between Advocates and Industry.
After joining Abbott he grew the team to 140+ advocacy members worldwide and watched advocacy become an integral enterprise within industry bringing the patient voice and expert advocate insights into drug development and driving access together for patients worldwide.
Jim has been with BMS for almost 2 years becoming a member of Cathy Traz’s team during the height of the pandemic making his way with his partner, dog and cat across the country in a 19 foot camping trailer to settle in their home in Yardley, PA.
His achievement during his career span from the advocacy support in the launch of Humira, working with Hep C advocates to allow placebo controlled phase 3 trials allowing approval of these curative compounds at least three years sooner than planned. He now proudly leads the Hematology Patient Advocacy Team with an excellent set of advocacy directors.
Jim’s full-time belief is that the harder one works, the luckier one becomes. That is evident in his life-long training in martial arts and over 5 Ironman Triathlons completed.
He lives with his partner Ben, two dogs – Romeo and Hamlet and two cats – Puck and iago.
Louise Binder
Health Policy Consultant, Save Your Skin Foundation
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Louise Binder
Health Policy Consultant, Save Your Skin Foundation
Louise Binder is a lawyer and health advocate who has been involved in informing the development of health policy and systemic treatment access practices from the patient perspective since the early 1990’s subsequent to her own HIV diagnosis. She co-founded the Canadian Treatment Action Council (CTAC) in 1996. Louise began similar work in the cancer area and is presently a Health Policy Consultation with the Save Your Skin Foundation. She has been recognized by many organizations for her work, including receiving an Honorary Doctorate of Laws from her alma mater, Queen’s Law School; the Order of Ontario from the Province of Ontario; and two Queen Elizabeth II medals.
Neil Bertelsen
HTAi Patient and Citizen Involvement Group
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Neil Bertelsen
HTAi Patient and Citizen Involvement Group
Neil has over 25 years’ experience in bringing the patient voice to life for healthcare decision makers. Neil has been a patient advocate in the field of HIV since the early 90s, and is the past chair of HTAi’s patient & citizen involvement group where he continues to work with HTA bodies around the world on improvements to patient engagement in HTA. Neil is also a board member of Patient Focused Medicines Development, an international multi-stakeholder effort to bring patients into the heart of medicine research and development. Neil regularly works with patient groups, healthcare decision-makers and the industry to collectively develop approaches that benefit patients.
November 30th, 2021
End of Life Care: A Retired Hospice Counselor Creates a Safe Space for an Uncomfortable Conversation
Susan Desmarais
Retired Hospice Counselor and End of Life Doula
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Susan Desmarais
Retired Hospice Counselor and End of Life Doula
Susan Desmarais is a retired hospice counselor and end of life doula. She specializes in holding safe space with people and their loved ones during illness and death. Susan lives with her spouse and their furry friends in a rural community in Massachusetts. In addition to surviving cancer, she bike rides through the woods, knits, reads and writes.
November 4th, 2021
How Technology and Personal Voices Partner to Create Scalable, Human Care
Paul von Autenried
Executive Vice President & Chief Information Officer, Bristol Myers Squibb
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Paul von Autenried
Executive Vice President & Chief Information Officer, Bristol Myers Squibb
Paul von Autenried heads Bristol Myers Squibb’s Information Technology organization, positioning the company for success in the rapidly evolving digital age. He is focused on ensuring the company’s information assets and operations are reliable, accessible and secure, driving the digitization of the company, adopting new approaches to digital health, and continuing an innovative approach to long-term partnerships with key IT service delivery companies.
“It’s an exciting time to lead an IT team as advances in technology are providing new opportunities to streamline our lives in unprecedented ways, including managing our health,” Paul said. “Delivering digital capabilities that accelerate the company's work of bringing innovative medicines to patients is both a challenge and an honor.”
Throughout his experiences in domestic and international high-tech, consumer packaged goods, and biopharmaceuticals companies, Paul's career has been focused on strategically leveraging information technology to drive superior performance. Before joining Bristol Myers Squibb, Paul held positions with Kraft General Foods, Hewlett-Packard and IBM. He serves on the Board of Trustees of the PennMedicine Princeton Healthcare System, and on the Board of Directors of Quick Base.
Paul has a bachelor’s degree in electrical engineering and a master’s degree in computer science from Stevens Institute of Technology, and has completed the Program for Management Development at Harvard Business School and the Program for Leadership Development at IMD in Switzerland.
Melodie Narain-Blackwell
Entrepreneur, Health Advocate, Founder of Color of Crohn’s and Chronic Illness (COCCI)
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Melodie Narain-Blackwell
Entrepreneur, Health Advocate, Founder of Color of Crohn’s and Chronic Illness (COCCI)
Melodie Narain-Blackwell is a serial entrepreneur and health advocate, who has always been passionate about supporting others and encouraging them to dig deep to pursue their purpose. Her belief in God has been the source of her drive and inspiration. As a multi-ethnic woman of faith, she has built businesses that represent all of the parts of who she is. Though she has been a part-time entrepreneur for more than 15 years, Melodie began her full-time entrepreneurial journey in 2018 after she was laid off from her full-time job. Unapologetically, she took a leap, putting her full trust in God, completely believing that he would provide for her as she pursued her dreams and purpose.
Concurrent with her lay-off and leap of faith, Melodie was diagnosed with Crohn’s disease, which has been an arduous ongoing battle for her life. Facing this health challenge head-on, led her to become a passionate health advocate for people of color who battle chronic illnesses. She launched Color of Crohn's and Chronic Illness, Inc (COCCI) in September 2019; a nonprofit that has the mission to advance the quality of life of minorities that are facing gastrointestinal and other debilitating illnesses.
Melodie, a native Washingtonian, was raised by a single mother who modeled resilience and fortitude. While her mother was a strong believer in traditional education, she also introduced Melodie to entrepreneurship at the age of 5. Melodie’s paternal grandmother was an immigrant who was a self-educated entrepreneur, a real estate investor/developer, and the owner of a laundromat. While her grandmother couldn’t read beyond a low level, her business acumen enabled her to provide for her family. As a child, Melodie spent a lot of time with her grandmother, and the lessons she learned shaped her strong work ethic and inspired her to pursue self-employment.
Melodie graduated from Berkeley College in Manhattan, New York with an A.A.S. in Fashion Marketing and Management, and a B.A. in Business Administration. She also completed coursework for an MA in Human Resources and an MS in Psychology. During college, Melodie worked with many celebrities and participated in numerous New York Fashion Week fashion shows. While she loved the fashion industry, she slowly discovered that a career as a fashion designer may not be her destiny. She could not shake the desire to own and operate a business that would provide opportunities and financial freedom for others, enabling them to prosper as a result of their own strengths. After college, over a span of 15 years, Melodie worked as an executive assistant to three different CEOs. She called these years her “on-the-job training” years, where she learned what she loved and disliked about Corporate America.
Early in her entrepreneurial career, Melodie owned and operated a successful event planning business. This experience led to her first foray into television when, in 2013, she was a cast member of the docu-series “Four Babies and a Wedding,” on Discovery channel. Melodie was the event planner for the Abubakers’ wedding in Aruba, which was a focal point of the show. Melodie was also a partner in the ownership of a bridal boutique in Urbana, MD.
In 2017, Melodie appeared on BETHer (formerly Centric TV) to pitch her company, Sole Savers, Inc., on the competitive reality show, Queen Boss. In 2018, Melodie became very ill and lost her full-time job, but that didn’t stop her from launching Smile Capital Recovery, Inc. (SCR), a business that she felt spiritually led to pursue. Often battling sickness, but keeping God as her primary partner, she used her “good days”, when she was feeling healthy, to pour into her businesses. In 2019, SCR would prove to be her most lucrative effort thus far, growing to half a million dollars in 8 months.
Entrepreneurship gave Melodie the flexibility and freedom to work on her physical healing, operate her businesses, mentor small business owners, and advocate for the chronically ill. Running various businesses for over 15 years confirmed for Melodie that business ownership was both her passion and her purpose. With a number of years invested, Melodie has seen many blessings and lessons come to pass and she now spends her time sharing these lessons with others. Melodie is a trailblazer dedicated to helping other business owners reach the fullness of their potential. She believes there is a biblical foundation for everything she does, and teaches others to apply these spiritual principles as well.
In addition to her professional successes, Melodie is especially proud of her family. She is a committed wife to Ronald, and a dedicated mother to their children, Zaden + Zarie.
October 14th, 2021
International Health Technology Assessments and Their Impact on Access and Patient Preferences
Michael L. Ryan, Pharm.D.
Senior Vice President and Head for U.S. and Worldwide Value, Access, Pricing and Health Economics and Outcomes Research, Bristol Myers Squibb
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Michael L. Ryan, Pharm.D.
Senior Vice President and Head for U.S. and Worldwide Value, Access, Pricing and Health Economics and Outcomes Research, Bristol Myers Squibb
Dr. Ryan is the Senior Vice President and Head for U.S. and Worldwide Value, Access, Pricing and Health Economics and Outcomes Research for Bristol-Myers Squibb. In this role, Dr. Ryan is responsible for Strategic Payer Marketing, Pricing and Contracting, Real World Evidence Generation & Analytics, Access Clinical Development, Payer and Organized Customer Sales, Market Access Scientific Liaison Program, and Health Economics and Outcomes Research across the $42B BMS worldwide biopharmaceutical and biomarker portfolio. Dr. Ryan serves on a number of BMS executive leadership teams including the BMS Commercial Leadership Team, Digital Health Steering Committee, Commercial Innovation Strategy Team, Commercial Development Operating Committee, Business Development Steering Committee, Pipeline Steering Committee, and Portfolio Strategy Governance Team. Dr. Ryan also serves as the Chair for the National Pharmaceutical Council (NPC) and has served as the BMS board member on the Biotechnology Organization (BIO), National Pharmaceutical Council (NPC), and the University of Southern California Schaeffer Center for Health Policy.
Prior to joining Bristol-Myers Squibb, Dr. Ryan spent 16 years at Amgen as the Vice President and General Manager of the Nephrology Business Unit for Amgen, where he was responsible for the P&L and life cycle management of Amgen’s three products used to treat patients with kidney disease; Epogen®, Aranesp® and Sensipar®.He also served as the Vice President and General Manager for Reimbursement, Value and Access, where he was responsible for all pricing, contracting, government price reporting, payer strategy and Value and Access Marketing across the $13B U.S. Amgen portfolio.
Prior to Amgen, Dr. Ryan served as the Vice President, Department of Pharmacy, Center for Biomedical Informatics, and UPMC For Profit Operations at the University of Pittsburgh Medical Center. Dr. Ryan also served as Chairman, Department of Pharmacy and Therapeutics, University of Pittsburgh School of Pharmacy, and he held affiliated faculty appointments with both the University of Pittsburgh School of Medicine, Department of Clinical Pharmacology, and the Center for Biomedical Informatics.
Dr. Ryan is a graduate of the University of California at Los Angeles and the University of California at San Francisco, and completed his residency program at the University of Michigan. After completing his residency, Dr. Ryan directed all clinical pharmacy research, education and operations at University of Michigan Medical Center and College of Pharmacy.
During his career, Dr. Ryan has been invited to present over 100 national platform presentations, and has over 40 refereed journal and textbook publications. The primary focus of Dr. Ryan’s research is U.S. health economics, biomedical informatics, and healthcare policy. Among his many and varied responsibilities, Dr. Ryan has led over 12 Pharmacy and Therapeutics Committees, implemented seven for-profit businesses, and served on numerous national health care committees and boards.
Stephanie Dyson
Vice President, U.S. Policy & Government Affairs, at Bristol Myers Squibb
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Stephanie Dyson
Vice President, U.S. Policy & Government Affairs, at Bristol Myers Squibb
Stephanie Dyson is Vice President, U.S. Policy & Government Affairs, at Bristol Myers Squibb, a global biopharmaceutical company committed to discovering, developing, and delivering innovative medicines that help patients prevail over serious diseases. In her role, Stephanie oversees U.S Public Policy as well as Federal and State Government Affairs functions, including stakeholder engagement and grassroots activation. Stephanie is an accomplished leader with over 20 years of healthcare policy and government affairs experience. She is passionate about the difference innovation makes for patients and has a strong record of delivering results that support corporate objectives and strategy. During her career, she has worked hands-on at the Federal and State levels of government, engaging trade associations, policymakers and their staff, advocacy groups, and policy officials across U.S. executive agencies.
In addition to her training as a registered nurse, Stephanie also received a master’s degree in Political Management and Policy from The George Washington University. She has been married to Charlie Dyson, the love of her life, for over 27 years.
Elizabeth Franklin, PhD, MSW
President, Cancer Support Community
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Elizabeth Franklin, PhD, MSW
President, Cancer Support Community
Elizabeth Franklin, PhD, MSW, is an advocate for people impacted by cancer and is passionate about ensuring that patient voices are the north star in health care decision and policy making. Growing up in Kentucky where cancer, cancer mortality, and poverty rates routinely rank among the highest in the country, Elizabeth was drawn to this work by witnessing people being left behind and systems that resulted in inequitable care. These values drive her as President of the Cancer Support Community (CSC), which is the largest provider of social and emotional support services for cancer patients and their loved ones in the United States.
Elizabeth has spent two decades as a nonprofit leader and has significant expertise in professional social work, research, and public policy. She was formerly Director of Policy and Engagement at the George Washington University Cancer Institute, Senior Director of Policy and Advocacy with the Prevent Cancer Foundation, and Special Assistant to the Chief Executive Officer at the headquarters of the National Association of Social Workers.
Elizabeth is a recognized author and speaker and was named a 40 under 40 leader in oncology in 2020. Her research articles have appeared in publications such as the JCO Oncology Practice, Journal of Cancer Education, Journal of Clinical Pathways, Health and Social Work, Value in Health, and Conquer Cancer Magazine. She has co-authored two books on non-profit leadership and co-edited two social work texts. In addition, she is a member and leader in various organizations and coalitions, including the Association of Oncology Social Work, Academy of Oncology Nurse and Patient Navigators, National Association of Social Workers, and the Alliance for Quality Psychosocial Cancer Care.
Elizabeth earned her doctorate at the University of Maryland School of Social Work, where she focused her dissertation on the ways in which patients define value in the cancer care system and how those definitions can be incorporated into public policy and clinical practice. Elizabeth obtained her Masters Degree in Social Work from the University of Illinois at Chicago and her Bachelors Degree in Social Work from the University of Kentucky. Elizabeth resides in Washington, DC and is an avid reader, aspiring banjo player, volunteer crisis counselor, and proud mother of pugs.
Dr. Androulla Eleftheriou
Executive Director, Thalassaemia International Federation (TIF)
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Dr. Androulla Eleftheriou
Executive Director, Thalassaemia International Federation (TIF)
Dr Androulla Eleftheriou obtained her graduate and postgraduate degrees in Biochemistry, Microbiology and Virology, and Business Administration from London universities. She has been awarded a number of scholarships by the Cyprus government, the World Health Organization and the Fullbright Commission. Her postdoctoral fellowship was completed at the Centre for Disease Control in Atlanta, GA, USA.
From 1990 until August 2006, she was Head of the Virus Reference Centre of the Cyprus Ministry of Health. Since 2005 she has held the post of director of the Cyprus WHO Collaborating Centre. She worked closely with TIF on an official basis since 1993 as a Scientific Coordinator of TIF’s educational programme, and since 2006 she has obtained an official post serving as the Executive Director of the Federation. She also regularly acts as a WHO consultant on issues related to her field of expertise.
Through her work with TIF, Dr Eleftheriou has carried out numerous projects of local, national, regional and international scope, working closely with international experts, local health professionals and thalassaemia associations worldwide. She is involved in the development and coordination of many joint activities and projects with official health-related organisations and agencies, national and regional health authorities and with numerous disease and non-disease specific patient/parents organisations.
Dr Eleftheriou is a member of Cyprus Haemoglobinopathies Forum and acts as the Director of the Cyprus WHO Collaborating Centre of the Cyprus Ministry of Health. Furthermore, she participates in the European Union Committee of Experts in Rare Diseases (EUCERD) and has served on the Board of Directors of European Public Health Alliance (EPHA) and on the Advisory Board of the European School of Transfusion Medicine (ESTM). She has also been the President of the Cyprus Alliance for Rare Disorders (CARD) from 2016 to 2019, and has served as Assistant to the Directors of the e-Msc in Haemoglobinopathies course from 2006-2014.
A member of European Haematology Association (EHA) and the Chair of the Higher Scientific Committee of SITA (Sultan Sultan Bin Khalifa International Thalassemia Award, Dr Eleftheriou has published extensively in peer reviewed journals and is the author of numerous position papers. She has received a certification for Capacity Building from Harvard University and been awarded the Panos Englezos Award by TIF in 2003, for her contribution to the promotion of TIF’s mission and activities.
John M. O'Brien, PharmD, MPH
President and CEO, National Pharmaceutical Council
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John M. O'Brien, PharmD, MPH
President and CEO, National Pharmaceutical Council
John M. O'Brien, PharmD, MPH, is the president and chief executive officer of the National Pharmaceutical Council (NPC), which sponsors and participates in research on the appropriate use of pharmaceuticals and the clinical and economic value of pharmaceutical innovation. NPC’s research contributes to the scientific foundation for informed discussions about health care access, coverage, appropriate use and value. As president and chief executive officer, Dr. O'Brien is responsible for overseeing NPC’s policy research and communications capacity, partnerships with other health care organizations, and strategic vision.
Dr. O’Brien’s broad experience spans the private sector, academia and government. Prior to joining NPC, Dr. O’Brien was senior advisor to the U.S. Secretary of Health and Human Services and deputy assistant secretary of planning and evaluation (health policy). He has also held senior policy positions in the life sciences and managed care industries, including at CareFirst BlueCross BlueShield, was a career official at the Centers for Medicare & Medicaid Services (CMS) during the Obama administration, and served as a health policy fellow in the U.S. Senate.
Dr. O’Brien earned his doctorate in pharmacy at Nova Southeastern University, his master’s degree in public health at the Johns Hopkins Bloomberg School of Public Health, and studied pharmacy and public policy at the University of Florida. His post-graduate experience includes the American Society of Health-System Pharmacists (ASHP) Executive Fellowship in Association Management and Leadership and the America’s Health Insurance Plans (AHIP) Certified Health Insurance Executive Fellowship.
He has held a number of academic appointments, including senior fellow at the USC-Schaeffer Center for Health Policy and Economics, clinical assistant professor at the Rutgers Pharmaceutical Industry Fellowship program, and assistant professor of clinical and administrative sciences at the Notre Dame of Maryland University College of Pharmacy, the first program of its kind created by a U.S. women’s college.
Dr. O’Brien has served on the boards of Pharmacy Quality Solutions, Kennedy Center Circles and the Congressional Chorus.
September 30, 2021
Giving Voice to the Often Voiceless: Advocate-led Research Creating Change
Dr. Roxana Mehran
MD, FACC, FACP, FAHA, FCCP, FESC, MSCAI
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Dr. Roxana Mehran
MD, FACC, FACP, FAHA, FCCP, FESC, MSCAI
Roxana Mehran, MD, FACC, FACP, FCCP, FESC, FAHA, MSCAI; Mount Sinai Professor in Cardiovascular Clinical Research and Outcomes; Professor of Medicine (Cardiology) and Population Health Science and Policy at the Icahn School of Medicine at Mount Sinai is an internationally renowned interventional cardiologist, and clinical research expert in the field of cardiovascular disease. She has built a globally-respected academic research center focused on developing randomized clinical trials and has served as principal investigator for numerous global studies, developed risk scores for bleeding and acute kidney injury, participates regularly in developing clinical guidelines, and has authored >1,000 peer-reviewed articles. Dr. Mehran is a current member of the American College of Cardiology (ACC) Board of Trustees and is a founder and Chief Scientific Officer of the Cardiovascular Research Foundation (CRF). She has been included for three consecutive years in Clarivate Analytics: “Most Cited Researchers – Top 1%” as well being included in “The World’s Most Influential Scientific Minds” (Thomson Reuters). In 2019, she founded Women as One, dedicated to advancing opportunities for women in medicine.
Dr. Mehran is currently leading the Lancet Commission on Women’s Cardiovascular Diseases, which brings together leading female researchers from around the world who have clinical expertise in cardiovascular medicine to identify and bridge gaps in research and care for women with cardiovascular disease.
Dr. Mehran is a recipient of several awards including the 2016 American College of Cardiology Bernadine Healy Leadership in CV disease award, the 2018 Nanette Wenger Award from Women’s Heart for excellence in research and education, the 2019 Ellis Island Medal of Honor, and the 2019 ESC Silver Medal and Andreas Grüntzig Lecture plaque.
Dr. Yasmin Ibrahim
Public Health Manager, Hepatitis B Foundation
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Dr. Yasmin Ibrahim
Public Health Manager, Hepatitis B Foundation
Yasmin Ibrahim is a public health manager at Hepatitis B Foundation (HBF). In the past two years, Yasmin led the patient engagement program, through her role, she supports people living with hepatitis B from around the world. In addition to directly interacting with patients through over 2,500 email consults annually, the program systematically assesses Patient Reported Outcomes (PROs) and Quality of Life (QoL) among people living with hepatitis B and liver cancer, to better understand the physical, social, and emotional impact of hepatitis B, and to inform and advocate for inclusion of PROs in liver disease management. The insights developed continue to inform the hepatitis B community partners, providers, regulators and the industry about patients’ challenges living with CHB and their hopes for, and perspectives on, new hepatitis B treatments.
Before joining the Hepatitis B Foundation, Yasmin spent most of her 20+ career working with policy makers, healthcare providers, patients, and patient organizations to improve quality of care, in different disease areas. Her focus has always been on low-resource communities.
Yasmin is a medical doctor, holds an MBA in healthcare, from Johns Hopkins University, and a PhD in health policy from Brandeis University. She thrives on positively influencing people’s lives, through knowledge transfer and education. She enjoys long walks, traveling, listening to music, watching documentaries about history and human behavior sciences, trying new food from different parts of the world and connecting with people from all over the world.
Alex Filicevas
Executive Director, World Bladder Cancer Patient Coalition, President, All.Can International
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Alex Filicevas
Executive Director, World Bladder Cancer Patient Coalition, President, All.Can International
Alex Filicevas is a passionate cancer patient advocate focused on driving meaningful change in cancer research, policy and care. Alex is Executive Director of World Bladder Cancer Patient Coalition, Global Cancer Coalitions Network member, President of All.Can International and EUPATI fellow. He leads the efforts to foster an international community of strong bladder cancer patient advocates and organizations around the world, empowering patient voices across research and care continuum. Passionate about high-quality, equitable cancer care for all, and the role of efficiency in achieving it, he champions evidence generation and sharing, and multi-stakeholder collaboration. Prior to his current roles, he was leading EU affairs work at Europe’s largest cancer patient umbrella organization, where he focused on advocacy activities, capacity building and policy initiatives with a particular focus on overarching issues faced by cancer patients and their careers in Europe. As a healthcare consultant, Alex has supported a number of private and non-governmental organizations in successful advocacy efforts at the EU level on a range of disease areas and issue-specific public health challenges.
Michelle Weese
Executive Vice President, Corporate Affairs
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Michelle Weese
Executive Vice President, Corporate Affairs
As Executive Vice President, Corporate Affairs, Michelle Weese oversees the company’s initiatives to protect, promote and enhance the Bristol Myers Squibb brand and reputation through strategic communications, government relations and policy, corporate social responsibility and patient advocacy.
Michelle joins BMS from the global food and beverage company Danone, where she served for two years as General Secretary for North America and also led strategic corporate functions, including government and public affairs, communications, community affairs, scientific affairs and sustainable development for North America.
In 2009 she founded the private consulting firm, strat-igence, serving as its CEO and working with a range of clients from the biopharmaceutical and consumer packaged goods industries, including Johnson & Johnson, Church & Dwight, PepsiCo and Unilever, on issues such as crisis management, corporate affairs and corporate transformation. Prior to that, she held positions of increasing leadership responsibility in corporate affairs at Mars, Inc. including serving as Global Head of Communications.
“Our role as biopharma leader has never been more important,” says Michelle. “In an evolving global market, this is a critical time to ensure that the innovative and transformative work being done by the company across multiple fronts is being communicated to our patients, policymakers, colleagues and broader stakeholders.”
Michelle earned her bachelor’s degree in Journalism from Georgia State University.
September 9, LUNGevity
LUNGevity Health Equity Council Series
September 9, 2021
The Evolution of Healthcare: Co-Creating the Future Through Collaboration
Mark Bertolini
Former Chairman and Chief Executive Officer, Aetna Inc. , Director of Verizon Communications Inc., and Massachusetts Mutual Life Insurance Company
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Mark Bertolini
Former Chairman and Chief Executive Officer, Aetna Inc. , Director of Verizon Communications Inc., and Massachusetts Mutual Life Insurance Company
Mark T. Bertolini is a national health care thought leader and the former Chairman and CEO of Aetna Inc. Mr. Bertolini assumed the role of CEO on November 29, 2010, and of Chairman on April 8, 2011. He stepped down as Chairman and CEO and served as a Director of CVS Health Corporation upon completion of CVS Health’s acquisition of Aetna on November 29, 2018, valued at $69 billion. Throughout Mr. Bertolini’s tenure at Aetna, he led the company’s transition from a traditional health insurance company to a consumer-oriented health care company focused on delivering holistic, integrated care in local communities.
Before joining Aetna, Mr. Bertolini held executive positions at Cigna, NYLCare Health Plans, and SelectCare, Inc., where he was President and Chief Executive Officer. Mr. Bertolini serves as a director of Verizon Communications Inc. (communications and technology solutions), Massachusetts Mutual Life Insurance Company (insurance and investment products), Thrive Global (sustainable, science-based solutions to enhance well-being, performance and purpose), and the FIDELCO Guide Dog Foundation (non-profit organization that breeds, trains and places German Shepherd guide dogs with people who have visual disabilities).
June 10, 2021
Living with Disease: A Conversation on Life After Diagnosis
Adam Lenkowsky
SVP and General Manager, U.S. Cardiovascular, Immunology and Oncology, Bristol Myers Squibb
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Adam Lenkowsky
SVP and General Manager, U.S. Cardiovascular, Immunology and Oncology, Bristol Myers Squibb
In this role, Adam heads a business unit that contributed more than one third of the company’s total revenue in 2020. He leads an organization of more than 2,500 employees that have delivered transformational medicines such as Eliquis, Opdivo, Yervoy, Zeposia and Orencia. He is passionate about cultivating a diverse and inclusive culture that prioritizes its people, performance, customers and, above all else, patients.
Adam is an experienced leader who has held numerous senior strategic and operational roles across the company. In his most recent role, he headed the company’s U.S. Oncology business, which, by revenue produced, was the single largest therapeutic division with Bristol Myers Squibb during his tenure. In 2014, he led the Worldwide Oncology Commercialization team, overseeing the launch of Opdivo, which now generates more than $1B a quarter and is widely recognized as one of the most successfully launched oncology products in history. Adam was instrumental in the design and creation of the company’s Integrated Oncology operating model to drive speed and success for marketed and pipeline oncology assets.
Adam’s full biopharma career extends more than 20 years across commercial, market access, sales and operations. He has held a number of commercial leadership positions at Bristol Myers Squibb.
He resides in Lawrenceville, NJ with his wife Candice, and two boys Andrew and Jack.
Shelley Fuld Nasso
Chief Executive Officer, National Coalition for Cancer Survivorship (NCCS)
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Shelley Fuld Nasso
Chief Executive Officer, National Coalition for Cancer Survivorship (NCCS)
Shelley Fuld Nasso, MPP, is CEO of NCCS, where she advocates to transform the cancer care system for everyone touched by cancer. NCCS engages in public policy efforts to improve cancer care and empowers cancer survivors and caregivers to be a voice in public policy debates. Prior to joining NCCS in 2013, she led public policy efforts at Susan G. Komen. She is a graduate of Rice University and the Harvard Kennedy School. She advocates in honor of her dear friend, Dr. Brent Whitworth, a beloved physician who died of cancer at the age of 43.
Julia Rowland, Ph.D.
Senior Strategic Advisor to Smith Center for Healing and the Arts
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Julia Rowland, Ph.D.
Senior Strategic Advisor to Smith Center for Healing and the Arts
Dr. Rowland is a long-time clinician, researcher and teacher in the area of psychosocial aspects of cancer. She has worked with and conducted competitively funded research among both pediatric and adult cancer survivors and their caregivers, and published broadly in psycho-oncology, including co-editing with the late Dr. Jimmie Holland the ground-breaking text, Handbook of Psychooncology.
Dr. Rowland received her PhD in Developmental Psychology from Columbia University and was one of the first two psychologists to complete a post-doctoral fellowship at Memorial Sloan-Kettering Cancer Center in psychosocial oncology. While at Memorial, she earned her license in psychology and held joint appointments in the Departments of Neurology and Pediatrics. In 1990 Dr. Rowland moved to Washington, DC to become founding Director of the Psycho-Oncology Program at Georgetown University and the Lombardi Cancer Center. Nine years later, she was recruited to the National Cancer Institute to become the first, full-time Director of the Office of Cancer Survivorship. During her tenure as Director, Dr. Rowland helped build the visibility of the Office of Cancer Survivorship and created numerous governmental and non-profit partnerships to advance public awareness about and funding for research advancing the healthspan and post-treatment care of the growing population of cancer survivors of all ages, and their families.
Upon retiring from the NCI in September 2017, Dr. Rowland assumed the role of Senior Strategic Advisor to Smith Center for Healing and the Arts, a 25-year old non-profit providing integrative care programs and services to cancer survivors, and their formal and informal caregivers, in the heart of Washington, DC. In this special role, she seeks to bring the growing evidence-base for best practices in quality survivorship care to the broader community.
Kimberly Richardson
Research Advocate, University of Illinois Cancer Center
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Kimberly Richardson
Research Advocate, University of Illinois Cancer Center
Ms. Richardson has been active since treatment in various forms of advocacy. She serves on the NCI Moonshot IMPACT program, as a pre-reviewer for the DOD/OCMRP and member of the OCRA Industry Council on Disparities. Her latest endeavor is the development of the Survivors Advising Scientist Educational Program (SASEP), a collaborative program between researchers and patient advocates that creates educational content for survivors and patient advocates who want to learn more about cancer research and scientific inquiry.
May 13th, 2021
Strategies to Support Patients: A Focus on Mental Health and Patient-Centric Care
Teri S. Brister Ph.D., LPC
National Director Research & Quality Assurance
National Alliance on Mental Illness (NAMI)
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Teri S. Brister Ph.D., LPC
National Director Research & Quality Assurance
National Alliance on Mental Illness (NAMI)
Teri Brister, Ph.D., serves as the National Director of Research & Quality Assurance at NAMI. Dr. Brister is responsible for ensuring that all content created and disseminated by NAMI attains the highest possible standards of accuracy, relevance, value and academic rigor. She is the author of NAMI Basics and co-author of the NAMI Homefront program. Prior to joining NAMI in 2005, Dr. Brister worked for twenty years in the community mental health system in Mississippi, working in both clinical and administrative roles, including Assistant Executive Director in two different centers. Dr. Brister received her Ph.D. in Public Policy and Administration from Jackson State University, and her Bachelor of Science and Master of Science degrees in Counseling Psychology from the University of Southern Mississippi. She is a Licensed Professional Counselor in Mississippi.
Dr. Cindi Slater
M.D., FACR Senior Vice President
Medical Affairs, ConsumerMedical
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Dr. Cindi Slater
M.D., FACR Senior Vice President
Medical Affairs, ConsumerMedical
Dr. Cindi Slater leads the physician staff and is responsible for clinical strategy at ConsumerMedical. She received her M.D. from the University of Pennsylvania and is board certified in internal medicine. Dr. Slater has been a Clinical Instructor of Medicine at Harvard Medical School and practiced internal medicine and urgent care at the Brigham & Women’s Hospital in Boston for over 20 years.
April 8th, 2021
Addressing Gaps in Healthcare Through Real World Advocacy
Danielle Halstrom
Head, R&D, GPS and Commercial Communications & Global Advocacy Corporate Affairs, Bristol Myers Squibb
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Danielle Halstrom
Head, R&D, GPS and Commercial Communications & Global Advocacy Corporate Affairs, Bristol Myers Squibb
Danielle is a healthcare communications strategist and leader with deep knowledge of the global biopharmaceuticals industry, pharmaceutical manufacturing and business operations as well as the overall healthcare environment. Builds and motivates high-performing teams to drive strategic internal communications, product communications and public relations, media relations, issues management, advocacy relations, patient education, stakeholder engagement and philanthropy programs. Creative business partner and persuasive leader with a proven track record of creating communications programs to drive success of primary and specialty care medicines and vaccines across a broad range of therapeutic areas.
Dave Craig
CEO, and CoFounder, GRYT Health
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Dave Craig
CEO, and CoFounder, GRYT Health
Dave Craig is a two-time cancer survivor, oncology researcher, and patient experience champion. He is CEO and co-founder of GRYT (“grit”) Health, a digital health company that connects individuals with similar experiences and engages them to inform, support, and facilitate improved disease management and patient well-being.
Through GRYT’s global oncology platform and work with the top healthcare organizations, we help advance the treatment, care, and experience of those affected by cancer. We do this through research, marketing, and clinical trial services that put people and caregivers first, integrating the patient experience – from early-stage treatments through long-term survivorship – to ultimately improve health outcomes.
In his recent TED Talk, Dave describes how he has catalyzed personal adversity, patient experience research, and digital technology to create a platform to connect, empower, and transform the living-with-cancer experience.
Reverend Anthony Evans
President of the National Black Church Initiative
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Reverend Anthony Evans
President of the National Black Church Initiative
Reverend Anthony Evans, President of the National Black Church Initiative (NBCI) brings over 25 years of extensive experience working in the District of Columbia and around the country on faith-based and social initiatives for the disadvantaged. During the last 17 years, Rev. Evans has developed the budgets, provided fiscal oversight, managed fundraising initiatives, developed and implemented the organizational strategic plan, and hired and trained staff for the NBCI. In addition, he has provided oversight on technical assistance initiatives for 150,000 faith-based communities. He serves as the liaison between faith-based communities, government agencies, and community-based organizations. Rev. Evans does extensive national and community work in youth crime prevention, sickle cell disease, assisting the United Way, and personally provides volunteer services to a homeless shelter, the DC jail, and serves as an advocate for the mentally challenged.
Tanya Ryder
Tanya Ryder, M.Ed., Director, DEI (Diversity, Equity & Inclusion) of NAMI (National Alliance on Mental Illness)
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Tanya Ryder
Tanya Ryder, M.Ed., Director, DEI (Diversity, Equity & Inclusion) of NAMI (National Alliance on Mental Illness)
Tanya joined NAMI in January 2013. Initially as Project Director for the STAR Center ( a National Technical Assistance Center for SAMHSA), she managed the planning, implementation, monitoring and evaluation of events, resources, communications and virtual learning for individuals from diverse communities. She currently leads initiatives for individuals with lived mental health experience, with a focus on culturally appropriate content. Tanya provides a variety of experience working with underserved and multicultural communities. Her previous employment in program/project management includes the Department of Family Services for Fairfax County Government, the Hispanic Committee of Virginia and the American Red Cross. Tanya holds a Bachelor’s degree in Communications and Sociology from Trinity University-Washington and a Master’s of Education in Curriculum and Instruction from George Mason University. She is a wife, mother of 2 girls, 4 Boston Terriers and a Cavalier King Charles Spaniel. Her passions are coffee, reading, running and podcasts. As a person in recovery, her faith and family are her cornerstones.
Venus Ginés
CEO and Founder of Dia de la Mujer Latina
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Venus Ginés
CEO and Founder of Dia de la Mujer Latina
Ms. Venus Ginés, a 29-year breast cancer survivor, who survived cancer for the second time in 2017 after 25 years of survivorship. In 2018, Venus retired as faculty member at Baylor College of Medicine in Houston, teaching cultural competence and health literacy, as well as conducting research on Latino medical mistrust. From her personal experience with cancer and her sister’s untimely death to cervical cancer, Venus founded Día de la Mujer Latina, Inc., (DML), in 1997 as a national non-profit organization, celebrating its signature health fiesta in 40 states, Puerto Rico, Mexico, and Dominican Republic, providing the medically underserved Latina community with culturally and linguistically proficient health education, early detection screening for chronic diseases, culturally-tailored preventive programs for Latino teens and patient-centered navigation. She also trained 4212 Promotores/Community Health Workers (P/CHWs) in Texas alone. Venus is a State Certified Instructor of P/CHWs with DML being the first approved bilingual Texas State Sponsored Certification Training Program. She chaired the Department of Health and Human Services National Promotores Initiative and has conducted P/CHW training for employees at the City of Houston and Austin’s Paramedics, and more recently the employees of a federally qualified health center. Venus continues to train many Promotores nationwide and in Latin America on key core competencies as it relates to our medically underserved communities. She developed bilingual training curriculum on subject matters that affects Latinas disproportionately such as Dispelling Myths and Rumors about Women’s Cancers, STDs, Patient Centered Care and Mental Health. The Autonomous University of Baja California Sur included Venus’s Promotora Curriculum as part of their 2019 Fall Training Program under Public Health. With her team of Instructors, she sponsored their training as Bilingual Mental Health First Aid Instructors and on April 16, 2021, achieved the goal of having the Governor’s Proclamation as Promotores/Community Health Worker Day in Texas.
March 23rd, 2021
Resilience: Leading in a Reset World Workshop
Ann M. Powell
Global Chief Human Resource Officer
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Ann M. Powell
Global Chief Human Resource Officer
Ann Powell is the EVP, Global Chief Human Resource Officer for Bristol Myers Squibb (BMS) whose mission is to discover, develop and deliver innovative medicines that help patients prevail over serious diseases.
With a focus on business performance, Ann leads efforts to drive the corporation’s global people strategy, empowering the company’s current and future workforce and building a healthy culture focused on serving patients and communities. Ann works across the enterprise to support BMS’s commitment to creating an energizing work experience and a culture that is powerfully diverse and globally inclusive. Most recently, Ann was appointed executive sponsor for COVID recovery at BMS, overseeing the global efforts to ensure the health and safety of employees while continuing to deliver for patients.
Ann’s industry experience and expertise lie in executive compensation, global leadership development, change management, global diversity and inclusion, training design and delivery, recruitment and placement, labor relations, mergers and acquisitions, divestitures and green field start-ups.
With a career spanning both international and domestic assignments, Ann has held leadership roles of increasing responsibility within the gas, chemical and pharmaceutical industries, including Dow Chemical and Wyeth Pharmaceuticals. Prior to joining BMS in 2013, Ann was the Chief Human Resources Officer for Shire Pharmaceuticals.
Ann holds a BS degree from Iowa State University, a Master’s degree in Industrial Relations, University of Minnesota, and is certified as a Senior Professional in Human Resources (SPHR®).
Ann is an avid reader and traveler and enjoys spending time with her family and friends.
Charlene Wheeless
Senior Advisor, Gagen MacDonald
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Charlene Wheeless
Senior Advisor, Gagen MacDonald
Two time cancer survivor, author of "You are Enough! Reclaiming your Career and Your Life with Purpose, Passion and Unapologetic Authenticity", former CCO of Bechtel Corp (a premier engineering and construction firm) and the senior advisor for equity and justice at APCO Worldwide, will open the session. Charlene’s book will debut in April 2021 and it details her experience as a Black, female executive and her courageous fight with cancer. The book features practical strategies for overcoming adversity from her lecture “Lessons from Being Invisible.” More Info
Maril MacDonald
CEO and Founder, Gagen MacDonald
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Maril MacDonald
CEO and Founder, Gagen MacDonald
Maril is a nationally recognized leader in communication, strategy execution and transformation. She’s pioneered a discipline that collaborates with corporate leaders to optimize business performance by engaging and mobilizing their workforce behind a company’s strategic goals, its culture and its brand. Her clients have included some of the world’s most recognized brands including Bristol-Myers Squibb, Coca-Cola, DuPont, GE, Johnson & Johnson, and United Airlines.
Maril is CEO and founder of Gagen MacDonald, a leading strategy execution and change leadership firm. She’s also founder of Let Go & Lead, an online community dedicated to new philosophies and strategies for leadership. Until its successful sale in 2016, Maril was also the CEO of Son&Sons, a leading branding and identity firm.
Maril is a current board member of the Women Presidents’ Organization, a non-profit international membership organization for successful female entrepreneurs. She’s a past chairman and long-serving board member of the Arthur W. Page Society and the Institute for Public Relations and serves as an Advisory Board Member for the Museum of Public Relations and the Arthur W. Page Center for Integrity in Public Relations.
Maril previously served as Chief Communication Officer and Executive Management Committee member for Navistar, and its operating company, International Truck and Engine Corporation. She worked closely with CEO John Horne, to direct the company’s highly successful cultural turnaround. This was a key factor in Navistar’s resurgence from the brink of bankruptcy to being named in the Wall Street Journal’s “top 10 Performers” list and Business Week’s “Top 50 Companies.”
Prior to joining Navistar, Maril was vice president of communications for Pitman-Moore Inc., and held several leadership positions spanning operations, communications, and human resources with Bayer USA Inc., and The Standard Oil Company / British Petroleum. Her broad range of corporate experience has allowed her to claim “the white space between the silos” as her ultimate functional expertise.
Maril is a recipient of Arthur W. Page Society’s Distinguished Service Award and has been recognized by PR Week as one of the top 25 leaders in the industry, and one of “The 50 Most Powerful Women in PR.” She was also recognized as a “PR All-Star” by Inside PR. She is frequently invited to speak at major conferences and universities. More Info
Patricia Bayerlein
Executive Director, Gagen MacDonald
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Patricia Bayerlein
Executive Director, Gagen MacDonald
With more than 20 years of experience in international marketing and communications, Patricia Bayerlein has advised local governments on international relations and developed business-to-business markets within Europe and Asia.
At Gagen MacDonald, Patricia provides change management and communication counsel to global Fortune 500 companies to effectively engage employees and prepare leaders for significant change. She has worked with senior teams on predicting, measuring and managing risk associated with implementing and executing change initiatives from business process transformation and restructuring within the pharmaceutical and medical device industries to mergers and acquisitions for specialty chemicals and consumer products.
Patricia also counsels clients on reorganizing communication functions for high performance. From planning to execution, she has led many corporate communication organizational assessments—from redesign to implementation—including United Airlines, Medtronic, Mosaic and several management consulting and technology services companies.
Earlier, Patricia was a director of marketing at Cendant Intercultural, a consulting firm for global business leading such diverse projects as global employer branding, effective cross-cultural workforce practices and global leadership development. Her clients included Dow Chemical, Motorola and Accenture.
Patricia began her career in marketing working for a business-to-business electronics manufacturer that developed products for Bosch, Black & Decker, Hitachi, Motorola, Nokia and Panasonic. She was responsible for managing marketing strategies for emerging markets and measuring international customer satisfaction. Patricia also spent two years as an international relations advisor to the mayor of Kawaguchi City, Japan to support local government initiatives.
Along with being conversant in Japanese and German, she has studied Sanskrit, Hindi, French and Classical Chinese.
Patricia is a member of the Institute for Public Relations Measurement Commission.
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March 11, 2021
Outlining Our Paths to Impact and Change
Rachel Giles
MD, PhD (IKCC Chair) Von Hippel-Lindau Organization / Living with Bladder or Kidney Cancer Netherlands
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Rachel Giles
MD, PhD (IKCC Chair) Von Hippel-Lindau Organization / Living with Bladder or Kidney Cancer Netherlands
Dr. Rachel Giles has experience as Associate Professor of Internal Medicine at the University Medical Center Utrecht in the Netherlands and is the Science Officer and Medical Education Specialist at Medicom Medical Publishers in Baarn, the Netherlands. She has been active in advocacy for patients with inherited kidney cancer since 2003 and has been chair of the Dutch VHL Organization since 2009. Rachel is Chair of IKCC and represents IKCC on the EAU Guidelines Committee for renal cell carcinoma.
February 11th 2021
Harnessing Our United Strength to Create Meaningful Change
Sheila Thorne
President and CEO, Multicultural Healthcare Marketing Group, LLC
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Sheila Thorne
President and CEO, Multicultural Healthcare Marketing Group, LLC
A native New Yorker and former senior executive in five preeminent marketing and communications companies, Sheila has spent more than two decades designing marketing, media and health education campaigns for the top 50 pharmaceutical companies across a broad range of therapeutic categories from molecule to market. A former high school teacher of foreign languages, she has worked on behalf of the healthcare industry throughout North America, Western Europe and Latin America with a focus on communities of color. She teaches and has lectured on health equity and cultural competency at Quinnipiac University School of Medicine, Rutgers, New York University and Queens College. She has given over 250 keynote presentations and conducting workshops on cultural competency, anti-bias and diversity. She is published in Pharmaceutical Executive, PharmaVoice, Medical, Marketing & Media and numerous articles published in a variety of consumer health and ethnic publications. Sheila is known for her unique ability to galvanize communities of color around health and social justice issues. She has been featured in Essence Magazine, Black Enterprise, The Positive Community, Madame Noire, The Network Journal and a frequent panelist during the sessions of the annual Congressional Black Caucus Health Braintrust, Congressional Hispanic Caucus Health Institute and the Asian Pacific Islander American Health Forum. Sheila has received numerous awards for her innovative health marketing strategies to reach people of color.
Tina Ripperger
Accenture, Managing Director
What If Innovation, Partner, Global Head of Life Sciences
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Tina Ripperger
Accenture, Managing Director
What If Innovation, Partner, Global Head of Life Sciences
Tina partners with clients to build growth futures and lead growth cultures. She embraces the disruptive forces reshaping the life sciences & health industry and uses innovation to solve the urgent human problems of today and tomorrow. Tina brings 20 years of healthcare experience to lead a diverse range of projects from growth strategy and business model reinvention to customer engagement. Tina’s work has spanned countless therapy areas and clients within the health ecosystem, including pharmaceutical, biotech, provider, health plan, pharmacy benefit manager, retail pharmacy and patient advocacy organizations.
She enjoys sharing her passion for healthcare innovation by speaking and serving as a panelist at industry events. Recent engagements include: “Design Thinking in Health Care,” Yale Center for Health Care Innovation - Health Tech Forum; “Your Consumers are Driving a Health Revolution. Are You Ready?” Harvard Business School - Heath Care Alumni Association conference; “Disruptive Innovation and the Future of Health Care,” Columbia Mailman School of Public Health.
Tina was formerly a Principal with the Health Strategy Practice of a leading management consulting company. She earned an MBA from Harvard Business School and holds a BBA from the University of Michigan.
Her dedication to improving lives through health and wellness runs deep. In her spare time, she can be found biking and fundraising for Cycle for Survival, a movement to beat rare cancers.
January 14th 2021
Advocacy for Advancements: Patient Insight Influencing Action
Brian Lee
Director, Global Advocacy, CV, Fibrosis, MS and LCM
Bristol Myers Squibb
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Brian Lee
Director, Global Advocacy, CV, Fibrosis, MS and LCM
Bristol Myers Squibb
Brian Lee is currently the director, global advocacy at Bristol Myers Squibb, based in Princeton, NJ, responsible for the cardiovascular, fibrosis, multiple sclerosis and life-cycle management therapeutic areas. Within Corporate Affairs, Brian is responsible for leading strategic engagement with advocacy groups across the entire product development and commercialization continuum, encompassing efforts in clinical trial awareness, early advocacy engagement, disease awareness, access and reimbursement, policy efforts and many more.
Brian’s previous experiences include stem cell research at UCSF, insurance reimbursement/patient support services, research and policy work at the Office of Health Information Integrity at the State Government of California, HealthNet Pharmaceutical Services, and policy and advocacy work at both Sanofi and BioMarin. Brian is a licensed and registered pharmacist in the state of NJ, with clinical and community pharmacy experience and Doctorate in Pharmacy from UCSF and post-doctoral fellowship from Rutgers University.
Maria Dutarte
Coordinator
European Patients’ Academy (EUPATI)
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Maria Dutarte
Coordinator
European Patients’ Academy (EUPATI)
Maria joined EUPATI in 2020. She oversees the team’s activities and manages the European Patients’ Academy. She has previously worked as a Project Manager at the European AIDS Treatment Group (EATG) coordinating patient involvement in a number of training initiatives and scientific projects. Maria has also worked for different scientific and international organizations. Her educational background is in International Education and Communications.
Mellanie True Hills
CSP, Founder and CEO
StopAfib.org
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Mellanie True Hills
CSP, Founder and CEO
StopAfib.org
Mellanie True Hills brings an atrial fibrillation (afib) patient perspective (now 15+ years afib-free). She is an internationally-known author and speaker and founder/CEO of StopAfib.org, a global afib patient advocacy organization. Successes include creating Afib Awareness Month, co-creating MyAFibExperience.org with AHA, co-chairing global advocacy task forces, convening the National AF Health Policy Roundtable, and hosting the annual Get in Rhythm. Stay in Rhythm. Atrial Fibrillation Patient Conference.
Neil Bertelsen
HTAi Patient and Citizen Involvement Group
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Neil Bertelsen
HTAi Patient and Citizen Involvement Group
Neil has over 25 years’ experience in bringing the patient voice to life for healthcare decision makers. Neil has been a patient advocate, and is the past chair of HTAi’s patient & citizen involvement group where he continues to work with HTA bodies around the world on improvements to patient engagement in HTA. Neil is also a board member of Patient Focused Medicines Development, an international multi-stakeholder effort to bring patients into the heart of medicine research and development. Neil regularly works with patient groups, healthcare decision-makers and the industry to collectively develop approaches that benefit patients.
December 17th 2020
Building Stronger Relationships Across Healthcare Through Empathy
Erin Galyean
Author, Speaker, & Trainer
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Erin Galyean
Author, Speaker, & Trainer
Erin has spent two decades honing her communication and interpersonal skills in the corporate sector. As a professional trainer, author, and public speaker, Erin is passionate about inspiring and encouraging others to live the life they truly desire. Daily she equips sales professionals with the skills needed to better communicate and connect with healthcare providers and mentors a small group of top-rated sales trainers. Erin’s favorite training workshops are those that focus on developing relational skills like emotional intelligence, advanced communication, and leadership.
Erin lost her father in 1997 to Non-Hodgkin's Lymphoma and her sister Meghan in 2018 to a rare lung disease. These heartbreaking life events taught her how to effectively advocate for a patient. The most recent loss of her sister led her to a vision of helping others powerfully advocate for the patient in their life.
Laura Adams
Special Advisor, National Academy of Medicine Catalyst, X4Health Principal, Laura Adams Consulting
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Laura Adams
Special Advisor, National Academy of Medicine Catalyst, X4Health Principal, Laura Adams Consulting
Laura Adams serves as Special Advisor at the National Academy of Medicine (NAM), where she provides leadership for the Digital Health and Evidence Mobilization portfolios of the Leadership Consortium, with the COVID-19 response as a critical area of focus. She has expertise in digital health, health care innovation, and human-centered care. As Catalyst at X4 Health, Laura leads the national strategic partnerships for the 3rd Conversation (3C) project (https://www.3rdconversation.org/), also critical in the wake of COVID-19, helping to reweave humanity into the fabric of healthcare and healing. She serves on the Board of Translational Medicine Accelerator (TMA), a Boston-based precision medicine company focusing on patients with recalcitrant and rare diseases.
Previously, Laura was the founding President and CEO of the Rhode Island Quality Institute (RIQI), RI’s statewide Health Information Exchange. During her time at RIQI, Health Data Management named her one of their 2018 Most Powerful Women in Health IT in the Thought Leader category and Becker’s Hospital Review named her to the 2018 inaugural list of Female Health IT Leaders to Know and to its 2019 list of Women in Health IT to Know. Laura currently serves on the Oversight Council for the MA Center for Health Information and Analysis. She chaired the Institute of Medicine’s (IOM) Planning Committee for the “Digital Infrastructure for Population Health and a Learning Healthcare System” initiative. Through her Laura Adams Consulting company, she has delivered conference keynotes in nearly every state in the union and in 13 different countries.
Laura traveled in the U.S. and Europe with W. Edwards Deming in the study of statistical-based quality improvement. She was Founder, President and CEO of Decision Support Systems, a New York-based company specializing in Internet-based healthcare decision support. She has been a long-time faculty member of the Institute for Healthcare Improvement (IHI) in Boston. She directed the IHI Idealized Design of the Intensive Care Unit project and served as faculty in the VHA’s ICU improvement collaborative and was the Principal Investigator on the RI Statewide ICU Collaborative. She was among the first to bring the principles of healthcare QI to the Middle East, in conjunction with Donald Berwick, MD and the Harvard Institute for Social and Economic Policy in the Middle East. She served as IHI faculty at the inaugural IHI Middle East Forum on Quality Improvement in Healthcare in Doha, Qatar.
Her publications include co-authoring with Gustafson, et al, Developing & Testing a Model to Predict Outcomes of Organizational Change, Health Services Research, 38(2), 751-776 and co-authored “Improving comfort and communication in the ICU: a practical new tool for palliative care performance measurement and feedback”, Nelson, J., Mulkerin, C., Adams, L. and Pronovost, P.; Quality and Safety in Health Care (QSHC), Aug 2006. She co-authored with Peter Pronovost, MD, et.al.; The Rhode Island ICU Collaborative: A Model for Reducing CLABSI and Ventilator-associated Pneumonia Statewide, QSHC, 2010;19:555-561.
Under her leadership, RIQI won the National Council for Community Behavioral Health Excellence Award for Impact in serving those with behavioral health and substance abuse challenges. She received citations from the RI Congressional delegation for her visionary leadership and contributions to improving the healthcare system in Rhode Island. Laura received University of Northern Colorado’s Distinguished Alumni award and her company was a multi-year winner of the Greater Providence Chamber of Commerce’s Exemplary award for Worksite Wellness. RIQI was named RI’s Most Innovative Company in Healthcare in 2015; was named 2017 Employer of Choice by the Employer’s Association of New England; and was a multi-year winner of RI’s Best Places to Work award from the Providence Business News. RIQI won the 2017 Innovation Award in Healthcare in Rhode Island, a national 2018 Healthcare Informatics Innovation Award for impact on the opioid crisis and was named a finalist for the 2018 New England Business Innovation award, again for impact on the opioid crisis.
Sandra Leung
Executive Vice President, General Counsel
Bristol Myers Squibb
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Sandra Leung
Executive Vice President, General Counsel
Bristol Myers Squibb
Sandy Leung serves as legal advisor to the Board of Directors and company executives, and is responsible for shaping the company’s legal strategy. Sandy is also responsible for Environment, Health & Safety & Sustainability, Corporate Security and Philanthropy.
“The accelerating pace of science, governmental policies and regulations and overall global complexity across our industry requires us to be even more agile than ever,” says Sandy. “Our legal team brings strategic value across all aspects of our business through practical and sound counsel that guide our company in its mission to help patients.”
Sandy joined Bristol Myers Squibb in 1992 as a staff attorney in the litigation department. In 1996, she became assistant counsel and one year later, was named associate counsel. In 1999, Sandy was appointed to the position of counsel and corporate secretary. In 2006, she was appointed acting general counsel and in 2007, she was named general counsel. In 2014, Sandy was named executive vice president.
Shanelle Gabriel
HBO Def Poet/ Singer/ Activist/ Advocate for Lupus Awareness
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Shanelle Gabriel
HBO Def Poet/ Singer/ Activist/ Advocate for Lupus Awareness
Shanelle Gabriel is a poet, singer, and lupus warrior from Brooklyn, NY who has performed internationally including Africa and Europe. Widely known for featuring on HBO's Def Poetry Jam, she has shared the stage with artists such as Jill Scott, Nas, Dave Chapelle and more. She was listed as one of Blavity.com's "Artist Activists You Should Know" and one of "8 Millennial Feminist Poets That Deserve Recognition" by BET.com. Shanelle is also a health activist who has spoken alongside the President of the National Institute of Health, on Capitol Hill, and has featured on the Lifetime Network, in Women’s Health Magazine, and more about her continued battle with lupus. Presently, she is working on her third album, pursuing her Master's in Education at Columbia University Teachers College while serving as the Interim Executive Director at Urban Word NYC, a youth organization that uses poetry & hip-hop to promote literacy and youth voice.
November 12th 2020
Taking Action to Correct Health Inequities
Anthonise Louis Fields PhD
Director, Strategic Collaborations, World Wide Medical
Bristol Myers Squibb
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Anthonise Louis Fields PhD
Director, Strategic Collaborations, World Wide Medical
Bristol Myers Squibb
Anthonise Louis Fields, PhD, is a Director of Strategic Collaboration at Bristol Myers Squibb (BMS) and serves as Head of the COVID Taskforce.
As an immigrant from Haiti, Dr. Fields is passionate about health equities. During the American Society of Clinical Oncology and American Society of Hematology annual congresses, she hosted several forums where the top leaders in oncology and health equity were convened to develop innovative solutions to key health equity challenges.
She received her Bachelor’s degree from the University of Pennsylvania and her PhD in Microbiology and Immunology in just over 3 years from the Temple School of Medicine. STEM education is a major focus for her; she serves on the BMS BOLD and PAN STEM Board and is an ardent mentor.
In her current role, Dr. Fields functions to define one aligned strategy for BMS and leading US Academic Institutions through collaborations. She directly interfaces with BMS leadership and Institution Executives to define strategies, evaluate opportunities, develop innovative solutions, and cultivate a trusted partner relationship.
Prior to joining BMS, Dr. Fields was recruited by Janssen (Johnson and Johnson), where she was responsible for the analytical strategy and execution of the vaccine portfolio, and presenting pivotal data to the FDA, Bill and Melinda Gates Foundation, NIH, and other partner academic institutions.
Preceding Janssen, Dr. Fields has an extensive history at Merck and Co, where she launched Suvorexant as Project Manager, managed 10+ Vaccine assets from PhI to Life-Cycle Management and managed the execution of the Ophthalmic portfolio.
Feyikemi (Kemi) Osundina PharmD, MS
Associate Director of Oncology Advocacy
Bristol Myers Squibb
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Feyikemi (Kemi) Osundina PharmD, MS
Associate Director of Oncology Advocacy
Bristol Myers Squibb
As an immigrant from Nigeria, Dr. Osundina has a passion for global health equity, outcomes research, policy and advocacy. Dr. Osundina joined BMS in 2017 as the BMS Foundation Public Health Resident supporting the organization’s mission to promote health equity and improve the health outcomes of populations disproportionately affected by serious disease in sub-Saharan Africa and in the U.S. After completing her residency, Dr. Osundina joined the BMS US Oncology Patient Advocacy and Professional Relations team.
In her current role, Dr. Osundina leads patient advocacy efforts supporting Lung, Mesothelioma, Head & Neck, and Glioblastoma cancers. She is also leading the US Advocacy Health Equity Strategy to ensure that every BMS advocacy initiative is considered through a Health Equity lens. Through collaborations with various internal matrix teams, Dr. Osundina works to evaluate opportunities and develop unique solutions that appropriately elevate the patient voice. Dr. Osundina has also made significant contributions to BMS’s overall Global Diversity & Inclusion initiatives through the People Business and Resource Group (PBRG) Clinical Trial Advisory Committee, as a member of the Black Organization for Leadership & Development (BOLD) leadership team and the Health Equity Initiative (HEI) Working Group.
Dr. Osundina obtained her Bachelor of Science in Pharmaceutical Sciences, Masters in Health Outcomes and Socioeconomic Sciences and Doctorate of Pharmacy from the University of Toledo, in Ohio. She enjoys traveling, volunteering and spending time with family and friends.
John L. Damonti
President, Bristol Myers Squibb
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John L. Damonti
President, Bristol Myers Squibb
John Damonti is the President of the Bristol-Myers Squibb Foundation and Vice President of Corporate Philanthropy and Patient Assistance at Bristol-Myers Squibb Company, a global bio-pharmaceutical Company.
John has more than 25 years of experience working in the areas of health policy, government affairs and social responsibility. The mission of the BMS Foundation is to seek innovative approaches to reducing health disparities by strengthening community-based healthcare worker capacity, medical care and community-based supportive services, and by mobilizing communities to fight disease.
John began his career as Manager of Community and Government Relations for Mutual of New York. He was also Director of the Primerica Foundation (now part of Citigroup) and before joining Bristol-Myers Squibb in 1991, served as Director of State Government Relations for Ciba-Geigy Corporation (now Novartis).
In addition to his professional accomplishments, he is a member of the Boards of the New York Academy of Medicine where he is also a Fellow and the George W. Bush Global Health Initiative.
John received his undergraduate degree from Bowling Green State University and a Master’s in Social Work from Fordham University where he was also awarded an Honorary Doctorate Degree in 2007.
Kristen D. Krause PhD, MPH
Deputy Director, Center for Health, Identity, Behavior and Prevention Studies (CHIBPS)
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Kristen D. Krause PhD, MPH
Deputy Director, Center for Health, Identity, Behavior and Prevention Studies (CHIBPS)
Kristen D. Krause, PhD, MPH (she/her/hers), is an adjunct faculty member at the Rutgers University School of Public Health (SPH) and the Deputy Director of the Center for Health, Identity, Behavior and Prevention Studies (CHIBPS), a leading training ground for LGBTQ scholars. She has expertise in HIV/AIDS, aging, resilience, and broader LGBTQ health disparities. More specifically, her work examines resilience as it relates to biological, psychological, and social health states among older gay HIV+ men. Previously, she was the recipient of a TL1 Pre-doctoral fellowship at the Clinical and Translational Science Institute at NYU Langone Health, and more recently received the Stuart D. Cook Excellence in Research Award for her dissertation work from the Rutgers SPH.
Patricia (Patti) Mae Doykos PhD
Lead, Health Equity Initiative and Director, Bristol Myers Squibb
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Patricia (Patti) Mae Doykos PhD
Lead, Health Equity Initiative and Director, Bristol Myers Squibb
Patricia “Patti” Mae Doykos is director of the Bristol Myers Squibb Foundation whose mission is to promote health equity and improve the health outcomes of populations disproportionately affected by serious diseases and conditions. In January 2020, she also took on the role of lead for the newly launched Bristol Myers Squibb Company Health Equity Initiative. Patti has over 23 years of experience and leadership in transformative corporate philanthropy & corporate social responsibility, product brand and strategic communications, and health equity & social justice.
Patti works on strategy, evaluation, communications, policy advancement and organizational development for the Foundation overall and currently leads two health equity focused national grants programs which provide funding for the development, testing and scaling of innovative models of specialty care delivery for diverse and medically underserved populations facing cardiovascular disease, rheumatoid arthritis, multiple sclerosis and cancer in the US and Brazil. She has also developed and led U.S. and international grant making and public-private partnership programs for global HIV/AIDS, women’s health, diabetes, cancer and serious mental illness. Among her current service roles are inaugural chair of the board of the Center for Global Health Equity at Dartmouth-Geisel Medical School, board of advisors member for Dartmouth-Geisel Medical School, advisory board member of the Center for Global Health at Rutgers University, trustee of Phillips Academy Andover and member of its Anti-Racism Task Force.
Prior to joining the Bristol Myers Squibb Foundation in 2002, Patti worked for five years on the business side of Bristol Myers Squibb leading International Public Affairs for the company’s HIV and infectious disease marketed products and cancer research & development pipeline program.
Patti holds a BA from Dartmouth College for majors in Government and German, MA in German Literature & Language from the University of Virginia and PhD in the same from New York University both with a concentration in Cultural Studies.
Perry N. Halkitis PhD, MS, MPH
Dean, Professor of Urban-Global Public Health, and Director of Center for Health, Identity, Behavior and Prevention Studies (CHIBPS) at the Rutgers School of Public Health
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Perry N. Halkitis PhD, MS, MPH
Dean, Professor of Urban-Global Public Health, and Director of Center for Health, Identity, Behavior and Prevention Studies (CHIBPS) at the Rutgers School of Public Health
Perry N Halkitis, PhD, MS, MPH is a public health psychologist, researcher, educator, and advocate who is Dean and Professor of Biostatistics and Urban-Global Public Health at the Rutgers School of Public Health. Dr. Halkitis is the Founder and Director of the Center for Health, Identity, Behavior & Prevention Studies (CHIBPS). For three decades, Dr. Halkitis’ program of research has examined the intersection between HIV, HPV and other STIs, drug abuse, and mental health burden, with regard to the biological, behavioral, psychosocial, and structural factors that predispose these and other health disparities in the LGBTQ+ population. His work focuses on the translation of this knowledge through implementation science research that examines the effectiveness of tailored and adaptive interventions in order to prevent and eliminate these disparities. His research program has been awarded over $30 million in grant funding. Most recently, he has been involved with New Jersey’s contact tracing efforts, helping to develop the curriculum and launch the New Jersey Community Contact Tracing Corps.
Steven Kramer
Deaf Community Representative
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Steven Kramer
Deaf Community Representative
Steven (with a V for Victory) Kramer is a pharmacy student at St. Louis College of Pharmacy at the University of Health Sciences and Pharmacy in St. Louis, MO. He is taking American Sign Language (ASL) classes at his local community college to better communicate with the Deaf community.
When not in class, he collaborates with various advocacy organizations to hold health fairs for the Deaf community and people with disabilities as a member of the Student National Pharmaceutical Association (SNPhA). SNPhA’s mission of “Serving the Underserved” aligns well with Kramer’s mission of “Educating Providers and Empowering Patients.” Kramer believes all patients have the right to accessible health information and community resources in a way they can understand.
October 14th 2020
Moving Forward and Rebuilding
Adam Grant
Organizational Psychologist The Wharton School of Business Bestselling Author Host: WorkLife, a TED Original Podcast
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Adam Grant
Organizational Psychologist The Wharton School of Business Bestselling Author Host: WorkLife, a TED Original Podcast
Adam Grant has been Wharton’s top-rated professor for seven straight years. As an organizational psychologist, he studies how we can find motivation and meaning, and lead more generous and creative lives. He has been recognized as one of the world's 10 most influential management thinkers, Fortune's 40 under 40, and Oprah’s Super Soul 100.
He is the author of multiple #1 New York Times best-selling books that have sold over 2 million copies and been translated into 35 languages: Give and Take, Originals, Option B, and Power Moves. His books have been named among the year’s best by Amazon, the Financial Times, Harvard Business Review, and the Wall Street Journal and praised by J.J. Abrams, Richard Branson, Bill and Melinda Gates, Malcolm Gladwell, and Malala Yousafzai.
Grant's TED talks on original thinkers and givers and takers have been viewed more than 20 million times. He received a standing ovation at TED in 2016 and was voted the audience's favorite speaker at The Nantucket Project. His speaking and consulting clients include Google, the NBA, the Gates Foundation, and the World Economic Forum, where he has been honored as a Young Global Leader. He hosts "WorkLife", a chart-topping TED original podcast; writes on work and psychology for The New York Times; and serves on the Defense Innovation Board at the Pentagon. He has over 3 million followers on social media and shares monthly insights in his newsletter, GRANTED.
Grant was profiled in The New York Times Magazine cover story, "Is giving the secret to getting ahead?" He was tenured at Wharton while still in his twenties, and has received the Excellence in Teaching Award for every class that he has taught. He is the founder and host of the Authors@Wharton speaker series, and co-director of Wharton People Analytics. He curates the Next Big Idea Club along with Susan Cain, Malcolm Gladwell, and Dan Pink, handpicking two new books each quarter for subscribers and donating 100% of profits to provide books for children in under-resourced communities. He is also the cofounder of Givitas, a knowledge collaboration platform that makes it easy to give and receive help in five minutes a day, and an angel investor in startups in HR and culture, technology, and consumer products.
Grant earned his Ph.D. in organizational psychology from the University of Michigan, completing it in less than three years, and his B.A. from Harvard University, magna cum laude with highest honors and Phi Beta Kappa honors. He has received awards for distinguished scholarly achievement from the Academy of Management, the American Psychological Association, and the National Science Foundation. His pioneering research has increased performance and reduced burnout among engineers and sales professionals, enhanced call center productivity, and motivated safety behaviors among doctors, nurses and lifeguards. He is a former magician and Junior Olympic springboard diver, and lives in Philadelphia with his wife, two daughters, and son.
Chris Boerner PhD
Executive Vice President, Chief Commercialization Officer, Bristol Myers Squibb
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Chris Boerner PhD
Executive Vice President, Chief Commercialization Officer, Bristol Myers Squibb
Dr. Christopher Boerner is currently the EVP & Chief Commercialization Officer at Bristol-Myers Squibb where he is accountable for the company’s global commercial activities. Prior to this, Chris has held senior roles leading both the ex-US and US commercial organizations at Bristol-Myers Squibb. He joined BMS in February 2015.
Prior to joining BMS, Chris served as the Executive Vice President of Commercial for Seattle Genetics, Inc., where he led all commercial activities for the company. Previously, he was its Senior Vice President of Commercial and its Vice President of Marketing. Before joining Seattle Genetics, Chris was with Dendreon Corporation, where he led the marketing team. From 2002 to 2010, he was with Genentech, a member of the Roche Group, where he served in a variety of commercial roles, including Director of Marketing on Avastin, Director of Avastin franchise strategy and Associate Director of Oncology Market Development. Prior to Genentech, he was with McKinsey & Company, a global strategic management consulting firm, where he served global pharmaceutical and biotechnology clients.
Chris received his Ph.D. and M.A. in Business Administration from the Haas School of Business at the University of California, Berkeley, and holds an A.B. in Economics and History from Washington University in St. Louis.
October 8th 2020
Getting Back to Work
Noreen Gleason
Executive Director, Business Continuity and Corporate Event Response Team Lead, Bristol Myers Squibb
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Noreen Gleason
Executive Director, Business Continuity and Corporate Event Response Team Lead, Bristol Myers Squibb
Noreen is responsible for leading BMS’s Business Continuity governance and strategy as well as the Corporate Event Response Team’s prevention, response and recovery of significant risks and crises to the enterprise. Prior to assuming this role in 2020, Noreen was responsible for investigating cyber security threats and regularly performed security risk mitigation strategies designed to reduce cost while ensuring the safety and security of personnel, facilities and products. She regularly aligned with her cross functional partners and developed and implemented a successful insider threat program and a companywide work place violence prevention and preparedness program. In 1985, Noreen began her career as a New Jersey State Trooper and later joined the Federal Bureau of Investigation (FBI) in 1991. Noreen retired as a FBI Senior Executive where she oversaw transnational organized crime investigations. She received a B.S. in Education from East Stroudsburg University and a M.A. in Educational Administration from Seton Hall University.
Tinamarie Duff
Global Lead, Differently-Abled Workplace Network (DAWN) People and Business Resource Group, Bristol Myers Squibb
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Tinamarie Duff
Global Lead, Differently-Abled Workplace Network (DAWN) People and Business Resource Group, Bristol Myers Squibb
A New York native living in New Jersey; Tinamarie has worked at Bristol Myers Squibb (BMS) for more than 20 years holding various leadership roles. She is currently the Global Lead for BMS’s DAWN (Differently-Abled Workplace Network) people and business resource group, which holds a mission to foster an environment and workplace culture that promotes the value of individuals with disabilities and their contributions to the company mission of helping patients prevail over serious diseases. DAWN has more than 2,200 members in 20 chapters around the world. Tinamarie is also a board member of All Wheels Up, a global organization that is conducting research and advocating for a wheelchair spot on commercial aircrafts. She is the mother of two smart and active children that keep her busy running from a lacrosse field to a fencing match.
September 10th 2020
Getting Back to Normal: Care by Putting Patients First
Dr. Nicholas A.J. Botwood BSc, MB BS, MRCP, MFPM
Head of US Medical Affairs, Interim Head of Oncology Development, Bristol Myers Squibb
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Dr. Nicholas A.J. Botwood BSc, MB BS, MRCP, MFPM
Head of US Medical Affairs, Interim Head of Oncology Development, Bristol Myers Squibb
Head of US Medical Affairs
Interim Head of Oncology Development
Dr. Botwood was recently appointed to lead the US Medical Affairs organization at Bristol Myers Squibb. He is responsible for US Medical’s first-in-class business model, developing a robust pipeline, supporting multiple launches and ensuring medical capabilities are in place to effectively execute on these priorities.
Dr. Botwood recently led the Oncology Clinical Development organization and is the interim Head of Oncology Development, responsible for the development, clinical monitoring, interpretation and analysis of all clinical trials and protocols in late stage development and life cycle management; also responsible for all global clinical development components of regulatory documents. Over the last three years, Nick and his team, working with broad cross functional groups have supported multiple new indications and asset transitions. He joined Bristol Myers Squibb in March 2015 as the OPDIVO/YERVOY Thoracic Development Team lead and led the team to worldwide approvals of OPDIVO in Lung Cancer and Head and Neck Cancer.
Prior to joining Bristol Myers Squibb, Nick spent 12 years at AstraZeneca in a variety of leadership roles including Medical, Operations, and Clinical Development. He trained as a clinical oncologist at Imperial College and the Hammersmith Hospital, leading a number of early phase clinical trials. He has an Honors Degree from University College London in Philosophy of Science and History of Medicine and is a member of the Royal College of Physicians UK and Faculty of Pharmaceutical Medicine.
July 23rd 2020
The Patient Voice & Patient-Focused Drug Development
Begonya Nafria
Coordinator, Share4Rare & Patient Engagement in Research Coordinator
Sant Joan de Déu Children's Hospital
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Begonya Nafria
Coordinator, Share4Rare & Patient Engagement in Research Coordinator
Sant Joan de Déu Children's Hospital
Begonya is the Patient Engagement & Research Coordinator at Sant Joan de Déu Children’s Hospital in Spain. She has deep experience in the field of patient and family involvement in research initiatives, especially in the area of pediatric clinical trials. Her personal story as a caregiver and patient advocate for her sister, a young adult with cerebral palsy, drives her commitment to achieving a better quality of life for pediatric patients through research and new treatments.
Begonya is a Fellow of EUPATI (first cohort), Coordinator of eYPAGnet (European Young Patients Advisory Group Network – www.eypagnet.eu), Coordinator of Kids Barcelona (YPAG of Sant Joan de Déu Children’s Hospital- www.kidsbarcelona.org), member of Children’s Medicines Working Party of EFPGCP, volunteer member of the Editorial Board of Center for Information & Study on Clinical Research Participation (CISCRP), reviewer of Research Involvement and Engagement Journal, Chair of the Educational Committee of ICAN (International Children’s Advocacy Network) and member of the Patients and Families working group of EnprEMA (European Network of Paediatric Research of EMA). She is coordinator of the cross-cutting theme of patient involvement in the Connect4Children project (pan-European paediatric clinical trials network), and a participant in the PARADIGM project, both funded by IMI.
She is also a coordinator of the Share4Rare project, funded by the European Commission, (H2020) which has the aim of developing a digital platform to improve research in the field of rare diseases through the collective intelligence of patients and families (www.share4rare.org).
Danielle Halstrom
Head, R&D, GPS and Commercial Communications & Global Advocacy Corporate Affairs, Bristol Myers Squibb
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Danielle Halstrom
Head, R&D, GPS and Commercial Communications & Global Advocacy Corporate Affairs, Bristol Myers Squibb
Danielle is a healthcare communications strategist and leader with deep knowledge of the global biopharmaceuticals industry, pharmaceutical manufacturing and business operations as well as the overall healthcare environment. Builds and motivates high-performing teams to drive strategic internal communications, product communications and public relations, media relations, issues management, advocacy relations, patient education, stakeholder engagement and philanthropy programs. Creative business partner and persuasive leader with a proven track record of creating communications programs to drive success of primary and specialty care medicines and vaccines across a broad range of therapeutic areas.
Kathleen A. Arntsen
President & CEO, Lupus and Allied Diseases Association, Inc.
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Kathleen A. Arntsen
President & CEO, Lupus and Allied Diseases Association, Inc.
Kathleen is the President & CEO of Lupus and Allied Diseases Association and has been a strong leader and patient advocate for the lupus, rheumatology and autoimmune communities for over thirty-four years. She also coordinates the Lupus Agencies of NYS and is a member of the Autoantibody Standardization Committee, the ALPHA Project Global Advisory Committee and numerous coalitions.
Kathleen has fought tenaciously to ensure that the patient voice is included as an equal stakeholder in the healthcare, regulatory and public policy arenas and across the research continuum. She has testified before the FDA, Congress, and various federal and state agencies, and is strongly committed to ensuring all Americans have access to the most appropriate and affordable healthcare. She served as the Lupus Patient Representative at the FDA and was the initiator and driving force behind the Lupus PFDD Initiative.
Kathleen’s work background and personal experiences have helped to shape her into one of the most powerful and unique advocates in the nation. She has received numerous awards for her efforts and is a graduate of Colgate University.
Oriana Sousa
SCOCHT survivor, Founder/Psychologist, Dealing with Cancer, Patient Advocate, Rare 2030, EUPATI Student
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Oriana Sousa
SCOCHT survivor, Founder/Psychologist, Dealing with Cancer, Patient Advocate, Rare 2030, EUPATI Student
Against all the odds, Oriana is now a 9-year small cell ovarian cancer hypercalcemic type (SCOCHT) survivor due to immunotherapy. She started her journey with cancer at age 22 and found that the first response from her providers was one of ignorance and even negligence. However, her obstinate attitude and her parents’ love enabled her to not give up; instead, she started to self-advocate. She went through several hospitals in her country and abroad, always focused on finding a cure. After four recurrences, she became, in 2015, the first patient with her type of cancer to try immunotherapy.
After seeing the results of the treatment, she gathered her courage and accepted a New York Times interview. Her goal was to not only be able to help more patients advocating for their treatments but also give visibility to her type of cancer and incite the medical community to look more closely at immunotherapy for rare cancer patients. She is trained as a Psychologist and, having in mind her personal life story, she feels the need to help others who are dealing with cancer. For that reason, she recently founded Dealing with Cancer, a website for online psychological appointments to support cancer patients, survivors and caregivers. She is currently a student of the Patient Expert Course at the European Patients’ Academy On Therapeutic Innovation (EUPATI), and she is proud to be a member of Rare 2030, a panel of patients, practitioners, and key opinion leaders that is proposing policy changes for rare disease patients across Europe.
Samit Hirawat M.D.
Chief Medical Officer, Global Drug Development, Bristol Myers Squibb
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Samit Hirawat M.D.
Chief Medical Officer, Global Drug Development, Bristol Myers Squibb
Samit Hirawat, M.D., joined Bristol Myers Squibb in June 2019 as Chief Medical Officer, Global Drug Development.
Samit is a highly collaborative leader who brings extensive drug development experience to the role. Prior to joining Bristol Myers Squibb, Samit most recently served as Executive Vice President and Head of Oncology Global Development at Novartis. Samit also led clinical development programs in multiple indications at PTC Therapeutics and Pfizer/Pharmacia Corporation.
Samit received his Bachelor of Medicine and Bachelor of Surgery (M.B; B.S.) from the Sawai Man Singh Medical College in India and completed his Internal Medicine Residency and Medical Oncology Training at North Shore University Hospital, New York. He is an author of several manuscripts and abstracts published in peer-reviewed journals and presented at major conferences. Samit is a recipient of several government grants, academic and corporate awards.
Tamás Bereczky MA, PhD
Courses and Contents Coordinator, EUPATI
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Tamás Bereczky MA, PhD
Courses and Contents Coordinator, EUPATI
Tamás Bereczky currently works as the Courses and Contents Coordinator of the European Patients’ Academy on Therapeutic Innovation EUPATI (www.eupati.eu), while also coordinating the national platform of EUPATI in Germany. HIV positive since 2003, he served as a member of the board of directors of the European AIDS Treatment Group (EATG) for almost 4 years, and also served as the co-chair of the European Commission’s Civil Society Forum on HIV/AIDS between 2013 and 2015; and has been involved in many E U and global projects. Tamás has been a member of the BMJ Patient Panel since 2017.
A linguist and psychologists, Tamás obtained a PhD based on research into the significance and perspectives of patient organizations in Europe in 2020. In addition to his work as a psychodrama practitioner, he also works as an advisor to several international and European institutions concerning HIV, HCV, men having sex with men, substance use, and health policy. Tamás lives with his partner in Berlin, Germany and is a proud grandfather.
July 16th 2020
Reshaping Healthcare: Thinking Differently after COVID
Eleanor M. Perfetto Edwards Ph.D., M.S.
Executive Vice President, Strategic Initiatives, National Health Council (NHC)
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Eleanor M. Perfetto Edwards Ph.D., M.S.
Executive Vice President, Strategic Initiatives, National Health Council (NHC)
Dr. Eleanor M. Perfetto was named Senior Vice President of Strategic Initiatives for the National Health Council (NHC) in July of 2015 and was promoted to Executive Vice President in January 2019. She also holds a part-time faculty appointment at the University of Maryland, Baltimore School of Pharmacy where she is Professor of Pharmaceutical Health Service Research. Her research and policy work primarily focus on patient engagement in comparative effectiveness and patient centered-outcomes research, medical product development; patient-reported outcome selection and development; and health care quality. Dr. Perfetto holds BS and MS degrees in pharmacy from the University of Rhode Island, and a PhD from the University of North Carolina School of Public Health with concentrations in health policy and epidemiology.
Ester Banque
SVP & Head of Intercontinental Commercial, Bristol Myers Squibb
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Ester Banque
SVP & Head of Intercontinental Commercial, Bristol Myers Squibb
Katie Rizvi
Youth Cancer Europe Co-Founder and Executive Director
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Katie Rizvi
Youth Cancer Europe Co-Founder and Executive Director
Katie is one of the founders of Youth Cancer Europe, a network of youth cancer organisations from across Europe, with a mission to help shape European policy and fix the disparities that exist across the continent for young people fighting cancer. Her special interest is youth empowerment and enabling survivorship communities, as well as endeavouring to make sure that Eastern Europe is firmly on the map as a part of the dialogue and an active contributor to European health policy.
In 2016 she became a member of the Children’s Medicines Working Party of The European Forum for Good Clinical Practice.
Since May 2015 she sits on the Board of Directors of PanCare, a multidisciplinary pan-European network for the long-term care of childhood cancer survivors.
In 2002 she co-founded the Little People Children’s Cancer Charity in Romania & the Republic of Moldova that today provides daily psychosocial support services in 10 hospitals, with nearly 100% patient reach in both countries, annually caring for up to 2000 inpatients and 300 or more young people in after-care, residential programmes.
KT Jones
Cancer Survivor & Patient Advocate
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KT Jones
Cancer Survivor & Patient Advocate
K.T. Jones had been told many times that he had come to the end — the end of available treatments, the end of cutting-edge options, the end of his life. But 16 years after being diagnosed with Hodgkin’s lymphoma, he’s still here, and he’s thriving.
How? Remarkable tenacity — and a clinical trial.
Before the clinical trial, K.T. had tried every treatment he could find, including chemotherapy, radiation, and bone marrow transplants. Each time the treatment worked well for a few months, but then the lymphoma would return. Undeterred, the father of one and former R&D specialist used his training — researching his disease and every possible treatment, convinced that something out there could save his life.
Lily Cannon
Operations Manager, Thalassaemia International Federation (TIF)
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Lily Cannon
Operations Manager, Thalassaemia International Federation (TIF)
With an academic background in Psychology and Human Resource Management, I joined the Federation in 2010 as the European Policy Officer focusing on advocacy, awareness raising and education about thalassaemia in the European Union. Since 2014, I have taken on the role of Operations Manager responsible for the implementation of action plans and the attainment of TIF strategic objectives. My dedication to the global thalassaemia family, working unceasingly for the improvement of the lives of patients is the driving force of my commitment.
July 9th 2020
Preventive Care & COVID
Anita Wiseman
Campaigns and Partnerships, World Stroke Organization
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Anita Wiseman
Campaigns and Partnerships, World Stroke Organization
Anita Wiseman has over twenty years of experience in strategic communication, engagement and campaigning in the health sector, she is currently an independent consultant based in Edinburgh, Scotland. As the Campaigns and Partnerships lead for WSO, she has been at the helm of three World Stroke Day campaigns and facilitated the development of WSO’s four year Strategic Campaign Framework.
In addition to the day job, Anita is a proud parent to her six year-old daughter and a Trustee to Link Education International. She holds an MSc in Public Relations and is a member of PRCA – the Public Relations Consultants Association.
Jessica Valence
Colorectal Cancer Survivor, Patient Advocate, Director of Operations, GRYT Health
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Jessica Valence
Colorectal Cancer Survivor, Patient Advocate, Director of Operations, GRYT Health
As Director of Operations at GRYT Health, Jessica helps build awareness of what it means to live your life with “GRYT.” At 25 years old, she had to fight for her own cancer diagnosis. After refusal from five doctors, due to her age and gender, the sixth doctor diagnosed her with Stage 3 colon cancer and gave her a two-month prognosis. Following treatment, Jess’ nurse practitioner suggested genetic testing, which revealed a PalB2 mutation. Originally overwhelmed with her diagnosis, after embracing other survivors in the cancer community, her outlook changed. She now uses her skills to do something amazing with each day and help those in the GRYT community find resources, their voice and be their own advocate.
Lisa Berry Edwards
Managing Director, External Affairs, Prevent Cancer Foundation
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Lisa Berry Edwards
Managing Director, External Affairs, Prevent Cancer Foundation
Lisa Berry Edwards has been at the Prevent Cancer Foundation since 2014 and has served in a variety of roles during this time. In her position as Managing Director of External Affairs, she oversees the Foundation’s communications and works to further the message of cancer prevention and early detection through material development, media outreach, education campaigns, and policy and advocacy.
Previously, she worked for the Council for a Strong America, a nonpartisan nonprofit organization, and the Leukemia & Lymphoma Society.
Lisa received her Bachelor of Science from the S.I. Newhouse School of Public Communications at Syracuse University. She currently lives in Maryland with her husband and son.
Patrick E. McBride MD, MPH, FAHA, FACC, FNLA
Emeritus Professor of Medicine and Family Medicine, University of Wisconsin School of Medicine and Public Health; Former Associate Dean of Faculty, and Associate Dean for Students; Former Director, UW Preventive Cardiology Program
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Patrick E. McBride MD, MPH, FAHA, FACC, FNLA
Emeritus Professor of Medicine and Family Medicine, University of Wisconsin School of Medicine and Public Health; Former Associate Dean of Faculty, and Associate Dean for Students; Former Director, UW Preventive Cardiology Program
Dr. McBride received his medical degree from University of Wisconsin School of Medicine and Public Health (UW SMPH) and master's degree in public health from the University of South Carolina (USC), where he also completed a family practice residency.
An emeritus professor in the Department of Medicine's section of cardiovascular medicine and the Department of Family Medicine at UW SPMH, McBride also co-directed the UW Hospital and Clinics' Preventive Cardiology program, with more than 30 professional staff and includes inpatient and outpatient cardiac rehabilitation, a preventive cardiology/cholesterol clinic, obesity programs, and other clinical initiatives for people at risk for cardiovascular disease. In 2004-2015, he was the Associate Dean for Students, and in 2016 – 2017 the Associate Dean for Faculty at the UW SMPH. He led the UW SMPH accreditation in 2009.
McBride's experience encompasses the three broad areas of academic medicine: education, research and clinical care. He has served on several national guideline panels including the National Cholesterol Education Program's (NCEP) Children and Adolescent Treatment Panel, the AAMC Obesity Panel, the AHRQ Cardiac Rehabilitation Expert Panel, and the NIH-NCEP's Adult Treatment Panel III and IV, as well as numerous local health system guidelines.
Sixteen local and national teaching awards bestowed upon McBride include the UWSMPH Dean’s Teaching Award, the UWSMPH PA Teaching Award, the UW Van Hise Wisconsin Idea Teaching Award and a lifetime position in the UW Teaching Academy. Dr. McBride was also given Distinguished Alumni Awards from the UW SMPH, the USC School of Medicine, the USC School of Public Health, the UW-Milwaukee, and Wauwatosa East High School.
With his primary research focus in preventive cardiology, cholesterol and hypertension treatment, and the quality of cardiovascular disease prevention in practice, McBride has authored or co-authored more than 200 publications, over 25 book chapters, and 4 textbooks. McBride is a leader in developing and implementing statewide teaching programs for health care professionals on heart disease prevention, cholesterol, and quality improvement.
Richard Wender M.D.
Professor, Family and Community Medicine, Thomas Jefferson University
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Richard Wender M.D.
Professor, Family and Community Medicine, Thomas Jefferson University
Richard Wender MD has dedicated his career to leading medical and public health efforts that strive to improve the quality of primary care, implement population health, and address social determinants of health in the continuous pursuit of equity for all people. As Professor of Family and Community Medicine, including 12 years as the Alumni Professor and Chair of the Department, Dr. Wender and his team spearheaded innovative programs in geriatric medicine, palliative care, the patient-centered medical home, quality-based payment, refugee health, and community partnership. From 2013 to 2020, Dr. Wender served as the first Chief Cancer Control Officer of the American Cancer Society. He helped to build a cancer control team that launched a transformative national initiative to achieve 80% colorectal cancer screening rates in every community, a national and global campaign to increase HPV vaccination rates, and an enterprise-wide effort to help build healthier communities.
Dr. Wender has continuously advocated for the importance of preventive care and for the creation of an effective bridge between primary care and public health. This includes providing 100’s of keynote addresses, at least one in all 50 states, and authoring numerous publications. As Chair of the National Colorectal Cancer Roundtable and a member of the steering committee for the President’s Cancer Panel cancer screening initiative, Dr. Wender is helping to lead efforts to promote the safe provision of cancer screening services during the COVID-19 pandemic.
Robert C. Block MD, MPH, FACP, FNLA,
Associate Professor, Department of Public Health Sciences and the Cardiology Division, Department of Medicine, University of Rochester
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Robert C. Block MD, MPH, FACP, FNLA,
Associate Professor, Department of Public Health Sciences and the Cardiology Division, Department of Medicine, University of Rochester
My clinical, research, and teaching expertise encompasses the treatment and prevention of cardiovascular diseases. I direct the University of Rochester’s Clinical Lipidology and LDL Apheresis Programs. I am Director of The Epidemiology and Prevention of Cardiovascular Disease course and Co-Director of The Epidemiology and Prevention of Chronic Diseases course in the University of Rochester’s graduate programs. My primary faculty appointment is in the Department of Public Health Sciences with secondary appointments in Cardiology and the Center for Community Health. I serve as a member of the Health Policy and Research Committee within the Science and Policy Council of the National Lipid Association. I have led projects sponsored by the Patient-Centered Outcomes Research Institute in which the focus has been partnering with patients with familial hypercholesterolemia in order to improve their health and develop research ideas. These projects were PCORI Pipeline to Proposal Tier I, II, and III Awards with Tier III ending July 31, 2018. I served as Principal Investigator for the “Educating Patients and Care Providers About Familial Hypercholesterolemia using EPIC” study. This study had 2 phases. The first was the Formative Phase in which we conducted key informant interviews and focus groups with patients with this disorder and primary care physicians to investigate what is most appropriate to integrate into eRecord (the University of Rochester Epic Electronic Health Record). The second phase involved integrating this content into eRecord and testing its effectiveness in improving LDL and non-HDL cholesterol as well as motivation, connectedness, and feelings of competence (the main elements of Self-Determination Theory). Learning from this ongoing project will optimize our methods moving forward with future research. In 2014-2015 I was Principal Investigator for a Kaneka-sponsored project entitled “Investigating the Motivation of Patients with Very High Cholesterol Enrolled in an LDL Apheresis Program” which used Self-Determination Theory to determine the supportiveness of this treatment program for patients with familial hypercholesterolemia. I was Principal Investigator for the clinical trial portion of the NHLBI/SBIR-sponsored Interactive Cholesterol Advisory Tool study (1R44HL097506-01) and directed the data analyses. It investigated the effects of the interactive “virtual clinician” electronic/web-based tool that we developed, on LDL and non-HDL cholesterol as well as participant motivation to make lifestyle and medication changes to lower their cardiovascular disease risk. Self-Determination Theory was the theoretical basis for this study. The first publication resulting from this study was published in the Health Informatics Journal (see below). I served as Co-Chair of the data safety monitoring board for the study entitled “Creating a Virtual Clinician Research Tool (VCRT Study)” sponsored by NIH/NIDA (R21DAO24262). It was a clinical trial studying the benefits of a “virtual clinician” computer-based tool in enhancing the management of dyslipidemia and nicotine dependence. My personal independent ongoing research also focuses on the prevention of cardiovascular diseases with a particular interest in the role of fish oil and aspirin. This interest led me to be PI for a completed R21 funded by NHLBI (R21-HL102582-01) and to become co-investigator for an R01 (1 R01 HL130099-01).
July 2nd 2020
Practical Solutions for Patients during COVID
Anders Thelborg
General Manager, Bristol Myers Squibb Denmark
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Anders Thelborg
General Manager, Bristol Myers Squibb Denmark
Anders Thelborg serves as General Manager for Denmark and Iceland at Bristol Myers Squibb, where he is a member of the BMS Nordic Leadership Team. Anders joined BMS in 2011. Prior to this, he spent several years at AstraZeneca. He also currently holds board appointments on AmCham Denmark and the Danish Association of the Pharmaceutical Industry. Previously, he was a Member of the former Government’s Growth Team for Life Science, advising the Danish government on its life science strategy.
Anders earned his M.Sc. in Economics and International Marketing & Management from Copenhagen Business School and his MBA from Bond University in Gold Coast, Australia.
Diane Gross
National Director of Advocacy and Programs, Lupus Research Alliance
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Diane Gross
National Director of Advocacy and Programs, Lupus Research Alliance
Diane leads the Lupus Research Alliance’s patient education and engagement programs and advocacy initiatives. She represented the LRA in a collaboration with other national lupus groups on the Lupus Patient-Focused Drug Development Initiative to bring the voice of people with lupus to the Food and Drug Administration. She has worked closely with pharmaceutical companies to organize patient advisory boards to provide input on clinical trial protocol and materials and to help the companies understand what it is like to live with lupus. She collaborates with other lupus groups and healthcare advocacy coalitions on issues related to government funding for biomedical research and patient care. Diane earned an MPH from the Columbia University School of Public Health, and has over 20 years in the healthcare arena with experience in the insurance industry and voluntary health organizations. She is particularly committed to alleviating health disparities, access to health care, and women’s health.
Gaetano Crupi
President and General Manager, Bristol Myers Squibb Brazil
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Gaetano Crupi
President and General Manager, Bristol Myers Squibb Brazil
Gaetano is a successful agent of change with solid general management experience within the complexity of the pharmaceutical industry with a wide range of experiences in Strategic and Line assignments. He is passionate about customers, interacts with them regularly and asks organizations to do the same without exception. Energetic leader, enthusiastic about what he does, leads by creating an environment where the teams feel valued and inspired to deliver objectives in a rewarding, engaged and challenging manner. With his Marketing background, Gaetano believes that strategies are only successful with excellent implementation. He focuses on ensuring that people are in the right place, with the right skills and with a clear understanding that their success is measured through results, not activities. Developing talent with specific focus on identifying his immediate successor has been one of his strengths. Team Success enables individual Success.
Communicating company strategy, values, talent development and performance is his top responsibility as a General Manager.
As an agent of change, he believes in influencing strategically the industry environment to improve patient access and make the Pharmaceutical Industry part of the solution, not part of the problem, in Health Care. Gaetano invests time in building consistent knowledge and contact with stakeholders by combining his strong social engagement with an emphasis on diversity & inclusion. He has a personal cause in improving racial equality of opportunities in Brazil. With solid experience in mergers and acquisition, Gaetano has consistently delivered positive outcomes and results in four different countries throughout four top multinational corporations: Eli Lilly, Abbott/ Abbvie (startup) and Bristol-Myers Squibb.
Kelly Brassil Ph.D., R.N.
Director of Medical Affairs, Pack Health
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Kelly Brassil Ph.D., R.N.
Director of Medical Affairs, Pack Health
Kelly Brassil, PhD, RN is the Director of Medical Affairs for Pack Health. She earned a Bachelor of Arts in Social Work from The Catholic University of America, a Master of Science in Nursing and a Master of Arts in Religion, both from Yale University, and completed her PhD in Nursing at the University of Texas Health Science Center Cizik School of Nursing in 2013. With a clinical background in hematologic malignancies and stem cell transplant, her research interests include exploring novel approaches to enhance the care experience of patients across the cancer trajectory. She also has done professional work in the field of immunotherapy , including serving as a guest editor on two supplements for the Clinical Journal of Oncology Nursing, a book chapter author, and a co-author of the American Society of Clinical Oncology Guidelines for the Management of Immune Related Adverse Events. Her current work is focused on developing digital health support programs for individuals with diverse cancer diagnoses and treatment approaches, and to address the holistic health and wellness needs of cancer survivors.
Megan-Claire Chase
Cancer Survivor, Blogger & Patient Advocate
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Megan-Claire Chase
Cancer Survivor, Blogger & Patient Advocate
Megan-Claire Chase, also known as Warrior Megsie, is a 4-year breast cancer survivor in Atlanta, GA. She is a sought-after influencer and blogger in the Young Adult Cancer community both nationally and internationally. Her blog, Life on the Cancer Train, is about her life post breast cancer (Stage IIA Invasive Lobular) and the struggles of being a young adult cancer patient/survivor while advocating for better treatments and resources. Megan-Claire’s writing is known for being authentic, raw, and informative with a twist of humor. It is also syndicated on Cancer Health Magazine’s website. She’s been a guest blogger for multiple cancer support sites including Lacuna Loft, SHARE Cancer Support, and Humor Beats Cancer. Her blog is syndicated on Cancer Health Magazine’s website. Megan-Claire was featured this year in The New York Times in April and People magazine in June discussing the concerns of receiving cancer treatments during COVID-19. Her cat Nathan (Natey) Edgar is her pride and joy.
Pat Masterson
Vice President, HUSCO International, MaskForce LLC
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Pat Masterson
Vice President, HUSCO International, MaskForce LLC
Patrick Masterson is a product development and manufacturing executive who is focused on exceeding customer expectations. Since 2013, Patrick has held the role of Vice President at HUSCO International where he has held leadership roles in program management, manufacturing equipment development and operations management. HUSCO International, headquartered in Waukesha, WI, is a global leader in hydraulic and electro-hydraulic controls for the construction, material handling and automotive markets. In 2020, Patrick shifted his focus to dedicate his time to serving first responders and frontline healthcare workers through HUSCO’s MaskForce LLC.
He holds a Bachelor of Science in Mechanical Engineering and a Master of Business Administration from Marquette University. Patrick resides in Wauwatosa, WI with his wife Sarah and daughter Casey. He is actively involved with Marquette University’s College of Engineering, coaches for the Tosa Kickers soccer club and facilitates the men’s ministry at Christ King Parish in Wauwatosa.
June 25th 2020
Mental Health, Well-Being, and Psychosocial Support for Patients
Catherine Benedict Ph.D.
Psychologist, Stanford University School of Medicine
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Catherine Benedict Ph.D.
Psychologist, Stanford University School of Medicine
As a clinical psychologist at Stanford, my work aims to support people affected by cancer, especially in dealing with the long-term challenges that persist or develop after treatment is completed. I work with patients to better manage all of the changes that cancer brings - physical, emotional, interpersonal, and financial. I am also honored to work closely with the GRYT team to support the cancer community through virtual programs and events, as well as other patient organizations such as Stupid Cancer and The Samfund.
Dominika Czarnota-Szałkowska
Secretary General, Polish Multiple Sclerosis Society, Executive Committee Member, European Multiple Sclerosis Platform
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Dominika Czarnota-Szałkowska
Secretary General, Polish Multiple Sclerosis Society, Executive Committee Member, European Multiple Sclerosis Platform
Master in Psychology, postgraduate studies in Neuropsychology. Secretary General of Polish Multiple Sclerosis Society, a Member of European Multiple Sclerosis Platform Executive Committee and MS NEED Steering Committee. Working for the Polish MS Society for over ten years and is responsible for external and media contacts, advocacy and lobbying for MS patients on various institutions (such as Ministry of Health, Parliament, National Health Fund, Ombudsman, Ministry of Family, Employment and Social Policy of Poland) ,writing articles for the press and preparation of publications for patients. Involved in a number of projects coordinated by the organisation, with a focus on those dedicated to young and/or newly diagnosed people with MS. Dominika is also particularly interested in the subject of paediatric MS, being actively engaged in lifting limitations of the treatment reimbursement for children diagnosed with Multiple Sclerosis.
Jasmin Watson-El
MS Patient Ambassador
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Jasmin Watson-El
MS Patient Ambassador
Jasmin is a Program and Project Manager who hails from Baltimore, Maryland. She is trained in Change Management with certifications as a Scaled Agilist and Customer Experience Professional. Jasmin earned her Bachelor's Degree in Communications with a focus in Public Relations and dual minor in International and General Business from Xavier University in Cincinnati, Ohio. She went on to earn her MBA in Business Management from Indiana Wesleyan University. Jasmin has served on the Board of Directors for a local nonprofit that serves the homeless community and as an Adjunct Faculty Member for a university program that bridges underserved Baltimore students from high school to college--offering them college course credits and job experience. As a member of Delta Sigma Theta Sorority, Inc., an international public service-based sorority, Jasmin enjoys being of service to others in any capacity that she is able to give her time and resources.
Jasmin works very hard to remain successful in her career but her job as the mother to her son, Keagan, is by far the most rewarding position she has ever held. She enjoys spending as much time with him as she can, while also making sure she remains accessible to the rest of her family with whom she is very close. Since Jasmin's diagnosis with Multiple Sclerosis (MS) in 2013, she has pulled herself up to take control of--and thrive with--her disease, traveling and speaking to various groups in the MS community as a Patient Ambassador. With this, she's found pride in serving as an inspiration to others who combat the chronic disease everyday, encouraging them to do more than just "have MS. I hope I’m showing people that even with MS, they can get up and live."
Kelly Davis
Director of Peer Advocacy, Supports, and Services, Mental Health America (MHA)
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Kelly Davis
Director of Peer Advocacy, Supports, and Services, Mental Health America (MHA)
Kelly Davis is the Director of Peer Advocacy, Supports, and Services at Mental Health America (MHA), where she promotes the expansion of peer support and youth and young adult leadership. In 2019, Kelly was awarded the Disruptive Innovator Award by the International Association of Peer Supporters, given to a young person making positive change in mental health through positive disruption. She is a certified yoga teacher and holds a certificate in applied positive psychology from The Flourishing Center. She is currently pursuing her Master's Degree in Nonprofit Leadership at the University of Pennsylvania.
Teri S. Brister Ph.D., LPC
National Director Research & Quality Assurance
National Alliance on Mental Illness (NAMI)
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Teri S. Brister Ph.D., LPC
National Director Research & Quality Assurance
National Alliance on Mental Illness (NAMI)
Teri Brister, Ph.D., serves as the National Director of Research & Quality Assurance at NAMI. Dr. Brister is responsible for ensuring that all content created and disseminated by NAMI attains the highest possible standards of accuracy, relevance, value and academic rigor. She is the author of NAMI Basics and co-author of the NAMI Homefront program. Prior to joining NAMI in 2005, Dr. Brister worked for twenty years in the community mental health system in Mississippi, working in both clinical and administrative roles, including Assistant Executive Director in two different centers. Dr. Brister received her Ph.D. in Public Policy and Administration from Jackson State University, and her Bachelor of Science and Master of Science degrees in Counseling Psychology from the University of Southern Mississippi. She is a Licensed Professional Counselor in Mississippi.
June 18th 2020
Telemedicine and Access to Care
Adriana Zupa-Fernandez
Global PBRG (People & Business Resource Group) Lead
Bristol Myers Squibb
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Adriana Zupa-Fernandez
Global PBRG (People & Business Resource Group) Lead
Bristol Myers Squibb
With over 15 years of experience in the pharmaceutical sector, Adriana Zupa-Fernandez is a dedicated scientist and leader. She has expertise across the industry and currently has assets in the clinic to potentially treat multiple autoimmune diseases. Adriana has worked as a Biologist to discover small molecule therapies and has also managed clinical trials. Her deep-understanding spans the Immunoscience, Immuno-Oncology, and Neuroscience spaces. Passionate and driven, she has proven herself in getting first-in-class assets from the discovery space to the clinic. She has taken that innovative approach and parlayed it into managing a global team focusing on people strategy, business insights, diversity & inclusion, and company culture as the Global Lead of Bristol-Myers Squibb’s (BMS) People Business Resource Group focusing on the Millennial and beyond workforce. Before taking the role as the CLIMB (Cultivating Leadership and Innovation for Millennials and Beyond) Lead, she collaborated to develop BMS’ first trans-inclusive guidelines, created and led an Adoption Community Network and successfully helped shape inclusive and flexible parental leave policies for the workforce. Beyond that, she facilitates patient advocacy relationships and continually finds ways to increase diversity in clinical trials. In 2017, she was chosen to represent BMS as a One Young World (OYW) delegate and was then selected in 2018 as the OYW team lead/Returning Ambassador for the company. She is an advocate, trailblazer, and author of multiple publications. She looks forward to growing and learning in her current leadership role to continually push for progress within the workplace and beyond.
Dr. Morhaf Al Achkar
Lung Cancer survivor, Family Physician UW Medicine
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Dr. Morhaf Al Achkar
Lung Cancer survivor, Family Physician UW Medicine
Morhaf Al Achkar, MD, Ph.D. was born in Aleppo-Syria and migrated to the United States in 2006 after finishing medical school. He also obtained a Ph.D. in Education from Indiana University. Currently, he is a practicing family physician and a faculty member at the University of Washington.
In 2016, Morhaf was diagnosed with stage 4 lung cancer. Since then, his research has focused on the experience of patients living with lung cancer. His writing is based on interviews he did with 39 patients who live, like him, with incurable cancers. He explores how these patients find meaning, cope, and build resilience.
Leticia Ferri MD MSc MBA PhD,
Global Lead, OLA (Organization for Latino Achievement), Bristol Myers Squibb
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Leticia Ferri MD MSc MBA PhD,
Global Lead, OLA (Organization for Latino Achievement), Bristol Myers Squibb
Letícia brings a unique experience to OLA (Organization for Latino Achievement) that spans from working as a physician in the pharmaceutical industry across different global markets such as Brazil, Canada, and the United States; as a physician scientist at the University of São Paulo and University of Toronto; and as a clinician specialized in Endocrinology and Internal Medicine. Letícia’s research and academic training includes an MD, Master of Science from Maringá State University in Brazil; Master of Clinical Epidemiology from the University of Toronto in Canada; and a PhD from the University of São Paulo in Brazil. She most recently graduated in 2019 with her MBA from Cornell University.
Her career at Bristol-Myers Squibb started in 2010 in Brazil. Later she was working in BMS Canada and since 2013 she has been in New Jersey working at different functions at medical affairs teams at BMS. She currently lives in Skillman-NJ, with her husband, Mauricio, and 11-year old daughter, Valentina.
Leticia has been appointed as the full time lead for OLA at BMS in June 2019.
Matt Bouchonville MD
Associate Professor, Division of Endocrinology, Associate Director, ECHO Institute, University of New Mexico School of Medicine
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Matt Bouchonville MD
Associate Professor, Division of Endocrinology, Associate Director, ECHO Institute, University of New Mexico School of Medicine
Dr. Bouchonville is an Associate Professor at the University of New Mexico School of Medicine in the Division of Endocrinology, Diabetes, and Metabolism and serves as Medical Director of the UNM Diabetes Comprehensive Care Center and UNM Center for Diabetes and Nutrition Education. He is an Associate Director of Project ECHO and Medical Director of the Endocrinology teleECHO (Endo ECHO) program at the ECHO Institute. In 2014, he launched the Endo ECHO program to build expertise for complex diabetes management among the primary care workforce in medically underserved regions of New Mexico. In his role as Associate Director, he joined the Cancer Initiative in 2019.
Sandeep Pulim M.D.
Chief Medical Officer, Bluestream Health
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Sandeep Pulim M.D.
Chief Medical Officer, Bluestream Health
Sandeep is the Chief Medical Officer at Bluestream Health. He most recently served as the Chief Innovation Officer at Medici, and prior to joining the Medici team, Sandeep worked to enable cognitive technology at the point of care for HCPs and patients, to positively impact clinical learning and quality measures for healthcare organizations, pharma, and payers. Previously as co-founder of Health Recovery Solutions, he helped empower patients to better manage their health and improve quality of life using evidence-based interventions. Dr. Pulim also helped create sustainable healthcare innovation via enabling fellows to improve the health of communities by creating innovative technology solutions that deliver transformational impact while molding the next generation of leaders at Health for America.
Sirisha Mohan M.D.
Clinical Assistant Professor, Telemedicine Physician Lead, Interim Associate Program Director, Family Medicine Residency Program, Department of Family Medicine, Keck School of Medicine
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Sirisha Mohan M.D.
Clinical Assistant Professor, Telemedicine Physician Lead, Interim Associate Program Director, Family Medicine Residency Program, Department of Family Medicine, Keck School of Medicine
Dr. Sirisha Mohan is a Clinical Assistant Professor in the Department of Family Medicine at the Keck School of Medicine. She serves as the Telehealth Lead for the department and is Interim Associate Program Director of the Keck Medicine of USC Family Medicine Residency program. Upon graduating from medical school at the University of Lublin and finishing at the Western Reserve Health Education Family Medicine Residency Program in 2014, Dr. Mohan completed a fellowship in Women’s Health at Florida Hospital. She began her career in academic medicine at the University of California in San Francisco where she served as the women’s health director and started clinical services in telemedicine in 2016. She joined the Keck School of Medicine in 2018 where she is Director of the Women’s Health Elective, lecturer and preceptor to the Family Medicine Clerkship and Senior Advisor to those students applying into Family Medicine. Her areas of clinical specialty include telemedicine, family planning and contraception, management of abnormal pap smears and abnormal uterine bleeding, chronic pelvic pain, hormone replacement therapy, weight management, diabetes, hypertension, hyperlipidemia, osteoporosis, depression and anxiety.
June 11th 2020
Safely Returning to Clinical Trials
Christopher D. Ferris MD, PhD, MPH
Gastroenterologist, Tryon Medical Partners
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Christopher D. Ferris MD, PhD, MPH
Gastroenterologist, Tryon Medical Partners
“The patient-doctor relationship is very important to me. I enjoy personal encounters with my patients and families. Those relationships are key to leading successful, jointly developed plans to improve symptoms and long-term health.
Medicine is not only a part of my life, but also my wife’s who works as a nurse. We have three children. We have a daughter at Myers Park High School, another daughter at UNC-Chapel Hill and a son at the University of Georgia. Outside of the office, I love golf and cheering on the Charlotte Hornets.”
Tryon Medical Partners is a new company performed by the exit of nearly 100 physicians as part of a multispecialty group from Atrium Health, formerly Carolinas healthcare system. Our group includes internal medicine physicians, gastroenterologists, endocrinologists, cardiologists, rheumatologists, dermatologists, sleep medicine physicians, and pulmonologists. Tryon Medical Partners is in the process of initiating clinical research programs and most all of these clinical specialties.
My background stems from 14 years at Johns Hopkins medical school and hospital where I completed an MD and a PhD degree. My PhD degree was actually in neuroscience-basic science rather than clinical research. However I was involved in translational research during that time. I also completed my residency in internal medicine and my fellowship in gastroenterology as well as a postdoctoral research fellowship at Johns Hopkins. Subsequently, I joined the faculty at Vanderbilt medical school and Medical Center. While there, I became the interim director of the GI division as well as director of clinical research.
Now that our group of doctors at Tryon Medical Partners has recently become independent, we have taken an interest in developing a significant clinical research program. Within gastroenterology we are participating in multiple clinical trials involving reflux disease, eosinophilic esophagitis and gastritis, Crohn's disease, ulcerative colitis, hereditary hemochromatosis and others. I am a principal investigator on several of the studies. This program is new and in fact has been delayed in its start up, somewhat, because of the COVID-19 pandemic.
Dave Craig
CEO, and CoFounder, GRYT Health
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Dave Craig
CEO, and CoFounder, GRYT Health
Dave Craig is a two-time cancer survivor, oncology researcher, and patient experience champion. He is CEO and co-founder of GRYT (“grit”) Health, a digital health company that connects individuals with similar experiences and engages them to inform, support, and facilitate improved disease management and patient well-being.
Through GRYT’s global oncology platform and work with the top healthcare organizations, we help advance the treatment, care, and experience of those affected by cancer. We do this through research, marketing, and clinical trial services that put people and caregivers first, integrating the patient experience – from early-stage treatments through long-term survivorship – to ultimately improve health outcomes.
In his recent TED Talk, Dave describes how he has catalyzed personal adversity, patient experience research, and digital technology to create a platform to connect, empower, and transform the living-with-cancer experience.
Dr. Amy C. Moore
Director, Science & Research, GO2 Foundation for Lung Cancer
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Dr. Amy C. Moore
Director, Science & Research, GO2 Foundation for Lung Cancer
As Director of Science and Research, Dr. Amy C. Moore combines her expertise as a Ph.D.-trained virologist and cancer researcher with over a decade of non-profit experience to help advance GO2 Foundation's science initiatives, with a particular focus on cultivating partnerships and new research studies with our sister organization, the Addario Lung Cancer Medical Institute (ALCMI), as well as stewarding collaborations with patient groups and managing our grants portfolio. Before joining GO2 Foundation, Amy spent 10 years building research capacity in the state of GA, where she served as the Director of Research Programs for the Georgia Research Alliance, a public:private partnership founded in 1990 that helped recruit leading scientists across GA’s research universities and created startup companies around new technologies and discoveries emerging from university laboratories. She also previously served as Director of Research Programs for the Georgia Cancer Coalition, which leveraged GA’s tobacco settlement dollars to build a nationally-recognized cancer initiative, with a focus on recruiting top researchers and launching a statewide biorepository. Amy earned her Ph.D. in Microbiology and Immunology from Wake Forest University School of Medicine and holds a B.S. in Biology (Phi Beta Kappa, summa cum laude) from Furman University. As a postdoc at Vanderbilt University Medical Center, she studied molecular mechanisms of acute leukemia development as an American Cancer Society Fellow. Amy also earned a professional certificate in Research Administration from Georgia State University, where she was in the first graduating class of the Executive Leadership Academy for Women and served as an adjunct faculty member in the Department of Biology and frequently taught a cancer course in the Honors College.
Kathleen Griffin
Executive Director, Partnerships and Digital Engagement, Syneos Health
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Kathleen Griffin
Executive Director, Partnerships and Digital Engagement, Syneos Health
Over 25 years of experience in clinical development and consulting. Fully engaged in the ideas and technology being used to innovate around the ways therapies are developed and delivered to the world.
Kathleen has been with Syneos Health since 2010, and currently works to identify opportunities to harness data and digital technologies to improve trial execution and commercial success. She monitors the digital health environment, supports business development efforts and looks for ways to partner across the organization, as well as with Vendors and Customers. Working with colleagues from across the organization, Kathleen is a champion for Dynamic Assembly, adoption of methods to enable Decentralized Clinical Trials, and knowledge sharing across the enterprise.
Early career in management consulting for Life Science and Investor organizations, founder of a strategic consulting firm, and has worked within CRO organizations with a focus on Strategic Planning, Organizational Development and technology strategy.
Kathryn (Kate) Owen
Senior Vice President, Major Markets, Bristol Myers Squibb
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Kathryn (Kate) Owen
Senior Vice President, Major Markets, Bristol Myers Squibb
As Senior Vice President, Major Markets, Catherine is responsible for the BMS commercialization business in key markets outside the U.S., a total of 16 countries including Japan, Germany and France, and over 4000 employees. The company portfolio of innovative prescription medicines spans therapeutic areas including Oncology, Hematology, Cardiovascular, and Immunology, with many recognizable brands including OPDIVO, REVLIMID, ELIQUIS, and ORENCIA.
Previously Catherine was a senior executive at Johnson & Johnson (J&J). In her last role, she was President, Immunology at Janssen Pharmaceuticals, responsible for leading the largest single business unit within J&J. The business included 5 marketed brands, over 1000 employees, and served patients within the areas of dermatology, gastroenterology, and rheumatology. Previously, Catherine was President, Infectious Diseases where she led the U.S. commercial business in making a difference in the lives of people living with HIV. Catherine began her Johnson & Johnson career as a London-based sales representative. During her more than 25 years with J&J, she held leadership roles in Pharmaceuticals, Medical Devices and Corporate Innovation in the U.K., the U.S., and global organizations. With a passion for digital connectivity, Catherine established the first North America Pharmaceuticals Digital Governance Board and digital champions’ team at Janssen and served as Digital Governance Lead for North America. She also served as the first leader of the Janssen North America Culture Team, and in her role as Diversity & Inclusion lead for North America, Catherine built the first Employee Resource Group Council.
Catherine is passionate about developing people, improving the lives of patients suffering from serious disease, and serves as a career mentor for many. In recognition of her efforts, she received the Healthcare Businesswomen’s Association Luminary award in 2018, and represented J&J at Forbes ‘NexGen’ most powerful woman in Pharma.
Catherine has an Honors degree in Pharmacy from the University of Manchester and a post-graduate degree in Marketing from the University of London. She is a member of the Royal Pharmaceutical Society of Great Britain and is an Associate of the Chartered Institute of Marketing. She lives in Pennington, NJ with her husband and two teenage daughters.
Upal Basu Roy PhD, MPH
Vice President of Research, LUNGevity Foundation
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Upal Basu Roy PhD, MPH
Vice President of Research, LUNGevity Foundation
Upal Basu Roy is Vice President of Research at LUNGevity Foundation, the pre-eminent lung cancer patient advocacy group in the United States. In this capacity, he directs both the Translational Science Research Program and the Patient-Focused Research Center (Patient FoRCe). Within the Translational Science Research Program, Upal guides the award administration and peer review of lung cancer translational research grants, as well as the monitoring and evaluation of research projects that focus on improving outcomes via early detection and improved treatment options. Within Patient FoRCe, he designs, implements, and manages all phases of research studies that seek to understand the lung cancer patient experience and identify unmet needs in education and access to care. Specifically, he manages protocol development to project execution to recommendations on how to incorporate Patient FoRCe research study findings into clinical practice. Upal has spearheaded several multi-stakeholder research projects that aim to increase access to lung cancer screening, biomarker testing, and clinical trials for lung cancer patients.
Upal firmly believes that lung cancer advocacy is a continuum that ranges from activities focused on individual patients to those spanning communities, organizations, and policy makers. As a patient research advocate, he works with the United States Food and Drug Administration, the National Cancer Institute, other patient advocacy groups, and pharma partners on policy initiatives to make clinical trials more streamlined and patient-centric.
Upal has over 10 years of translational cancer research experience in the laboratory. He has a PhD in Cancer Biology and an MPH in Global Health Policy and Management. Upal is a published author and serves as peer reviewer for translational science and public health journals.
June 4th 2020
Going Virtual: Best Practices for Advocacy Organizations
Crista Lopes
Professor, University of California, Irvine
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Crista Lopes
Professor, University of California, Irvine
Cristina (Crista) Lopes is a Professor of Software Engineering in the School of Computer Sciences at University of California, Irvine, with research interests in Programming Languages, Software Engineering, Distributed Virtual Environments, and just about anything else that relates to the art of programming. She is an IEEE Fellow, an ACM Distinguished Scientist, and Editor in Chief of The Art, Science, and Engineering of Programming. She is the recipient of the 2016 Pizzigati Prize for Software in the Public Interest for her work in the OpenSimulator virtual world platform. Her book "Exercises in Programming Style" has gained rave reviews, including being chosen as "Notable Book" by the ACM Best of Computing reviews.
Dave Craig
CEO, and CoFounder, GRYT Health
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Dave Craig
CEO, and CoFounder, GRYT Health
Dave Craig is a two-time cancer survivor, oncology researcher, and patient experience champion. He is CEO and co-founder of GRYT (“grit”) Health, a digital health company that connects individuals with similar experiences and engages them to inform, support, and facilitate improved disease management and patient well-being.
Through GRYT’s global oncology platform and work with the top healthcare organizations, we help advance the treatment, care, and experience of those affected by cancer. We do this through research, marketing, and clinical trial services that put people and caregivers first, integrating the patient experience – from early-stage treatments through long-term survivorship – to ultimately improve health outcomes.
In his recent TED Talk, Dave describes how he has catalyzed personal adversity, patient experience research, and digital technology to create a platform to connect, empower, and transform the living-with-cancer experience.
Lorna Warwick
CEO, Lymphoma Coalition
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Lorna Warwick
CEO, Lymphoma Coalition
Lorna Warwick, BA, BEd, has successfully held senior leadership roles in health charities for more than twenty years and has a diverse background in patient advocacy, mission development, communications and strategic planning. Her efforts have been focused on haematological cancers since 2003, at a national (Canada) and global level.
Recognized and respected for strong leadership skills, breadth of knowledge, critical thinking, and patient-focus, Lorna was appointed CEO of the Lymphoma Coalition (LC) in December 2018, to provide vision and leadership for the 83-member strong organisation.
As a result of her years of experience in advocacy and especially in the haematology field, she is frequently asked to present on emerging trends and important issues in the lymphoma and CLL landscape.
Nick Giallourakis
Co-Founder and President, Elephants and Tea
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Nick Giallourakis
Co-Founder and President, Elephants and Tea
Nick is the Executive Director of the Steven G AYA Cancer Research Fund and President/Co-Founder of Elephants and Tea. The Steven G. AYA Cancer Research Funds’ mission is to support the adolescent and young adult (AYA) cancer community in wellness, education and research.
Nick is passionate about helping the AYA cancer community unite during social isolation: before, during and after COVID-19.
Shwen Gwee
VP and Head of Global Digital Strategy, Bristol Myers Squibb
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Shwen Gwee
VP and Head of Global Digital Strategy, Bristol Myers Squibb
Shwen is a recognized pioneer in digital health and social pharma, as well as a well-respected industry thought-leader who was named a Top 40 “Healthcare Transformer” by MM&M in 2015 and a PR Week and MM&M "Health Influencer 50" in 2017 & 2018.
He sits on various advisory boards, including: Google (Healthcare), SXSW (Health), MM&M Healthcare Transformers, conversationHEALTH, GRYT Health and the Digital Health Coalition.
Shwen brings over a decade of experience leading digital strategy and driving innovation in commercial, communications, and clinical organizations, both on the client-side and at leading creative agencies. He is often featured in industry publications, speaks regularly at industry events and chairs.
Shwen is also very involved in the health tech startup community and organizes startup bootcamps, runs startup pitch contests and plays an active role running healthcare hackathons around the world as part of the MIT Hacking Medicine team.
May 28th 2020
Coalitions & Collaboration
Pat Garcia-Gonzalez
CEO, The Max Foundation
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Pat Garcia-Gonzalez
CEO, The Max Foundation
For more than 20 years, Pat Garcia-Gonzalez, Chief Executive Officer of The Max Foundation has been dedicated to improving the lives of cancer survivors around the world. A native of Argentina, Pat has a master’s degree from the University of Washington and a technical degree in nursing. Pat is the co-founder of The Max Foundation, started in 1997 in honor of her step-son, Max.
Under Pat’s direction since 2005, The Max Foundation is dedicated to increasing global access to treatment, care and support for people living with cancer. Each quarter, the organization channels over a million defined daily doses of life-saving cancer treatment to patients in 66 low- and middle-income countries. The organization carries out its daily work in partnership with a global network of 220 physicians and 70 patient associations.
Pat is an advisor to the CML Advocates Network, the International CML Foundation, and on the Board of the Partnership for Quality Medical Donations. In recognition of her tireless efforts on behalf of patients worldwide, Pat has been honored with the CEO Award from the Union for International Cancer Control; the distinguished Golden Tennis Shoe Award from United States Senator, Patty Murray; the first National Cancer Institute Global Cancer Medicine Humanitarian Award; and the inaugural Emerging Regions Support and Partnership (ERSAP) Prize by the International CML Foundation for her role in leading The Max Foundation.
Pat lives in Edmonds, Washington, where she raised her four sons.
Dr. Cary Adams
CEO, Union for International Cancer Control (UICC)
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Dr. Cary Adams
CEO, Union for International Cancer Control (UICC)
Born in London, Dr. Cary Adams has a BSc Honours degree in Economics, Computing and Statistics from the University of Bath, United Kingdom and a master’s degree (with distinction) in Business Administration. He is a Harvard Business School Alumni having attended the school’s Executive General Management programme in 2003.
In 2009, Dr. Adams made a career change, moving from the management of international businesses in the banking sector to become CEO of UICC based in Geneva.
UICC unites and supports the cancer community to reduce the global cancer burden, to promote greater equity, and to ensure that cancer control continues to be a priority in the world health and development agenda. Its rapidly increasing membership base of over 1100 organisations in more than 170 countries features the world’s major cancer societies, ministries of health and patient groups and includes influential policy makers, researchers and experts in cancer prevention and control. UICC also boasts more than 50 strategic partners.
Dr. Adams and his team focus on global advocacy, convening the cancer community (through World Cancer Day, the World Cancer Congress and the World Cancer Leaders’ Summit) and running significant global capacity building projects that address global cancer issues.
Dr. Adams also serves as a member of the Board of Directors of the NCD Alliance, a coalition of around 2,000 organisations working on non-communicable diseases, which include cancer, diabetes, heart, respiratory, mental and neurological diseases. He is also an advisor to the City Cancer Challenge Foundation and the McCabe Centre for Law on Cancer.
In 2014, he was awarded an Honorary Doctorate in International Relations from the University for Business and International Studies in Geneva and in 2015, an Honorary Doctorate in Health from Bath University in the UK. In May 2015, Dr. Adams was awarded ‘CEO of the year’ at the International and European Association conference organised by the Associations Network.
Trudie C A Lobban
MBE, Founder & Trustee, Arrhythmia Alliance, Founder & CEO, AF Association, Founder & CEO, STARS
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Trudie C A Lobban
MBE, Founder & Trustee, Arrhythmia Alliance, Founder & CEO, AF Association, Founder & CEO, STARS
Trudie Lobban MBE, FRCP Edin, established STARS (Syncope Trust And Reflex anoxic Seizures) charity following the diagnosis of her daughter with RAS and at the request of her paediatric neurologist in 1993. STARS has developed into an international non-profit organisation and Trudie is recognised worldwide as a patient expert on syncope and unexplained loss of consciousness.
Trudie was instrumental in organising and campaigning to introduce new standards in the UK for arrhythmias and sudden cardiac death with the successful launch of an extra chapter in the National Service Framework on Coronary Heart Disease by the government and Department of Health in the UK in 2004/5. Trudie went on to establish the Arrhythmia Alliance - The Heart Rhythm Charity®: working together to improve the diagnosis, treatment and quality of life for all those affected by arrhythmias.
A-A is a coalition of charities, patient groups, patients, carers, medical groups, policy makers, politicians, government officials and allied professionals. Although these groups remain independent, they work together under the A-A umbrella to promote timely and effective diagnosis and treatment of arrhythmias.
In 2007, due to the high demand for information and resources on atrial fibrillation, Trudie launched the AF Association.
Trudie has provided a unique partnership between healthcare professionals, politicians, policy makers, patients and caregivers and allied professionals. Trudie was recognized for her Services to Healthcare when being made a Member of the British Empire (MBE) in the Queen’s Birthday Honours list in 2009.
The Charities Commission has congratulated her on providing such a service. All three charities are now international and established in more than 40 countries; Trudie is President/Chair internationally.
She was recognised for her contribution to medicine when she was made an Honorary Fellow of the Royal College of Physicians.
Trudie continues to bring together and facilitates individuals and groups to ensure best practice is identified and shared and reducing duplication of work. Such an example is the establishment of the Heart Rhythm Congress www.heartrhythmcongress.org which is unique in the world as it brings together patients and healthcare professionals, politicians, policy makers and industry over a four-day period to share and present latest research and treatment options.
Trudie is Chair or member of numerous Advisory Boards both nationally and internationally and is author/co-author of numerous publications and research projects. She sits on many committees – NICE, NHS, PHE, NICOR, NIHR, NHS SCIP, NCSPLC, AF Screen, BHRS & BCS Council, and numerous research committees – the only non-medical person to do so. Her services are called upon globally where she presents or contributes on the importance of patient involvement and HCP education to improve outcomes in the patient care pathways and delivery of health services. She is also an author and co-author of numerous medical papers relating to cardiac arrhythmias.
Trudie has personal experience of living with arrhythmias – first her youngest daughter suffering with RAS, followed by the death of her husband in 2008 from sudden cardiac death. Both her parents have been diagnosed with atrial fibrillation (AF). Trudie is called upon globally to provide expert advice and opinion from not only the patient perspective on living with health conditions but also from a policy and medical viewpoint – thereby improving services, reducing costs and ensuring the patient care pathway provides the optimal outcome. Trudie has presented and participated regionally, nationally and internationally at medical congresses and patient/carer meetings, including the European Society of Cardiology Syncope Taskforce, British Heart Rhythm Society, Cardiac Society of Australia & New Zealand, United Arab Emirates Cardiac Society, Heart Rhythm Society (USA), Cardiac Society of South Africa, European Heart Rhythm Society, Uruguayan Cardiac Society, Latin American Cardiac Society, Canadian Cardiac Society, International Association of Patient Organisations (IAPO), the All Party Parliamentary Medical Group on Devices, the Labour Party Conference Health Forum, Patient Link Programme and European Federation Neurological Society. She is a regular speaker at the annual Heart Rhythm Congress in the UK where she is Chair and organiser. Trudie also co-Chairs the All Party Parliamentary Group on AF where AF Association acts as secretariat, and the All Party Parliamentary Group on Arrhythmias.
STARS www.stars-international.org celebrated its 25th anniversary in 2018 and launched ‘Take Fainting to Heart - there is no such thing as a simple faint’. Arrhythmia Alliance www.heartrhythmalliance.org has placed over 3000 automated external defibrillators through its ‘Defibs Dave Lives’ campaign www.defibssavelives.org including in police cars in the USA. Trudie was asked to present to the FBI to raise awareness and education its members on the importance of knowing CPR and the use of an AED. AF Association www.afa-international.org has led various international initiatives including the ‘Know Your Pulse’ campaign www.knowyourpulse.org.
Trudie has authored and co-authored numerous papers, appeared in many journals, written a chapter for ‘Cardiology Clinics’ as well as involvement in countless media outlets. She has been interviewed on numerous TV and radio in the UK and globally including Australia, Argentina, Uruguay, Italy and media tours of USA talking on syncope, AF and arrhythmias. Trudie regularly meets with government officials, ambassadors, health ministers, royalty and Prime Ministers as well as Members of the European Parliament to highlight the need for improved services for people with cardiac arrhythmias and those delivering the service.
May 21st 2020
Welcome & Introduction
Andrea Vassalotti
Partnerships & Programmes Director
World Heart Federation
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Andrea Vassalotti
Partnerships & Programmes Director
World Heart Federation
Since September, 2017, Andrea manages partnerships between the World Heart Federation, a Geneva, Switzerland-based NGO representing the global cardiovascular community, and private sector companies committed to the fight against cardiovascular disease. Her activities include leveraging the World Heart Day global awareness campaign, promoting the Global Circulatory Health Summit thought leadership platform, as well as engaging with industry in support of a variety of field activities and CVD Roadmaps designed to improve heart health globally.
A dual citizen of Switzerland and the United States, Andrea spent 16 years of her career at DuPont, in a variety of sales & marketing management positions. She is a graduate of Hofstra University, New York (USA) with a Bachelor of Science Degree in Applied Economics and holds an MBA degree from Università Luigi Bocconi, Milan, Italy.
Catherine Owen
Senior Vice President, Major Markets, Bristol Myers Squibb
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Catherine Owen
Senior Vice President, Major Markets, Bristol Myers Squibb
As Senior Vice President, Major Markets, Catherine is responsible for the BMS commercialization business in key markets outside the U.S., a total of 16 countries including Japan, Germany and France, and over 4000 employees. The company portfolio of innovative prescription medicines spans therapeutic areas including Oncology, Hematology, Cardiovascular, and Immunology, with many recognizable brands including OPDIVO, REVLIMID, ELIQUIS, and ORENCIA.
Previously Catherine was a senior executive at Johnson & Johnson (J&J). In her last role, she was President, Immunology at Janssen Pharmaceuticals, responsible for leading the largest single business unit within J&J. The business included 5 marketed brands, over 1000 employees, and served patients within the areas of dermatology, gastroenterology, and rheumatology. Previously, Catherine was President, Infectious Diseases where she led the U.S. commercial business in making a difference in the lives of people living with HIV. Catherine began her Johnson & Johnson career as a London-based sales representative. During her more than 25 years with J&J, she held leadership roles in Pharmaceuticals, Medical Devices and Corporate Innovation in the U.K., the U.S., and global organizations. With a passion for digital connectivity, Catherine established the first North America Pharmaceuticals Digital Governance Board and digital champions’ team at Janssen and served as Digital Governance Lead for North America. She also served as the first leader of the Janssen North America Culture Team, and in her role as Diversity & Inclusion lead for North America, Catherine built the first Employee Resource Group Council.
Catherine is passionate about developing people, improving the lives of patients suffering from serious disease, and serves as a career mentor for many. In recognition of her efforts, she received the Healthcare Businesswomen’s Association Luminary award in 2018, and represented J&J at Forbes ‘NexGen’ most powerful woman in Pharma.
Catherine has an Honors degree in Pharmacy from the University of Manchester and a post-graduate degree in Marketing from the University of London. She is a member of the Royal Pharmaceutical Society of Great Britain and is an Associate of the Chartered Institute of Marketing. She lives in Pennington, NJ with her husband and two teenage daughters.
Cathy Trzaskawka
Executive Director & Head, Global Advocacy, Bristol Myers Squibb
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Cathy Trzaskawka
Executive Director & Head, Global Advocacy, Bristol Myers Squibb
In her current role, Cathy heads global advocacy at BMS, developing and advocating company positions on priority issues to maximize patient access and promote a strong climate of biopharmaceutical innovation, as well as working with advocacy organizations and other key stakeholders about the value of innovative medicines.
Cathy also leads the BMS Global Advocacy Digital Health initiative, focused on engaging with advocacy organizations to explore FDA patient-focused drug development guidance (21st Century Cures) and other guidance (EMA, HTA) on patient experience data through social media data and companion DH technology partnerships; driving internal and external assessments of early patient engagement to develop strategy; creating an end to end, comprehensive, expert patient engagement process for inclusiveness across the entire BMS continuum.
Ms. Trzaskawka started her career in the New Jersey State House as a communications specialist working with the Assembly Health & Human Services Committee, among others, before moving onto Governor Christie Todd Whitman’s team as Deputy Director of Intergovernmental Affairs. From the State House, Cathy continued on as a community affairs lobbyist, to corporate affairs, then took an incredible opportunity as Executive Director of the Leukemia & Lymphoma Society, SNJ. Her move into pharmaceuticals came from her advocacy and patient education work at LLS. She has held several senior positions at pharmaceutical companies including GSK, Endo, and now BMS.
Cathy has an excellent track record of utilizing optimism and strong personal beliefs to overcome social and business challenges, and mobilizing people around a higher purpose, while committed to corporate social responsibility. She currently lives in Medford, NJ with her husband Ed and three children.
Dave Craig
CEO, and CoFounder, GRYT Health
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Dave Craig
CEO, and CoFounder, GRYT Health
Dave Craig is a two-time cancer survivor, oncology researcher, and patient experience champion. He is CEO and co-founder of GRYT (“grit”) Health, a digital health company that connects individuals with similar experiences and engages them to inform, support, and facilitate improved disease management and patient well-being.
Through GRYT’s global oncology platform and work with the top healthcare organizations, we help advance the treatment, care, and experience of those affected by cancer. We do this through research, marketing, and clinical trial services that put people and caregivers first, integrating the patient experience – from early-stage treatments through long-term survivorship – to ultimately improve health outcomes.
In his recent TED Talk, Dave describes how he has catalyzed personal adversity, patient experience research, and digital technology to create a platform to connect, empower, and transform the living-with-cancer experience.
Gary Nolan
Independent Advisor
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Gary Nolan
Independent Advisor
Utilizing over 15 years of medical communications experience, Gary has developed a unique skill in forming, facilitating and nurturing community collaborations, in order to support mutually beneficial outcomes.
Over the years Gary has supported numerous communities in identifying common educational needs, navigating sensitivities and co-creating alliances. All initiatives are nationally neutral, yet globally inclusive, and strive to lift levels of knowledge. Gary applies his passion and scientific rigor to all partnerships and the collaborations he supports.
Seth D. Ginsberg
CO-Founder, Global Healthy Living Foundation (GHLF)
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Seth D. Ginsberg
CO-Founder, Global Healthy Living Foundation (GHLF)
Seth Ginsberg is an international health advocate and thought leader based in New York City. Ginsberg was diagnosed in 1994 with Spondylarthritis, and in 1999, at age 18, he helped pioneer the world’s first online patient community for the millions of people worldwide suffering from arthritis, called CreakyJoints. CreakyJoints has grown into a trusted and recognized web site and patient community, delivering robust patient education, community-based and web-based support, advocacy initiatives and patient-centered research. In 2007, Ginsberg and social entrepreneur Louis Tharp co-founded the Global Healthy Living Foundation, the 501(c)(3) non-profit parent organization of CreakyJoints and other advocacy-related activities for neurological and cardiovascular conditions. CreakyJoints Australia, also lead by Ginsberg, is the first international patient community under the GHLF umbrella, and constitutes a growing and vibrant community of patients throughout Australia.
Since 2014, Ginsberg has served as a Principal Investigator of the PCORI-funded patient-powered research network ArthritisPower®. As a web and smartphone app, ArthritisPower is an innovative registry engineered for and by people with rheumatoid arthritis and related autoimmune and inflammatory conditions. Research efforts are overseen by a patient governor group as well as a distinguished research and corporate advisory board.
In 2011, Ginsberg helped create GHLF’s 50-State Network, which is an active network of more than 1,300 patient advocates, based in all 50 states and Puerto Rico. Under Ginsberg’s leadership, the 50-State Network focuses on barriers to care people living with chronic illness endure by working with state governors, legislature leadership and insurance commissioners as well as Congress and health-related Congressional Committees and Caucuses, the U.S. Department of Health and Human Services (HHS) and its regulatory agency the Food and Drug Administration (FDA).
Ginsberg appears as a guest on local and national broadcast news programs, is a regular op-ed contributor, healthcare news, opinion and advice columnist for U.S. News & World Report, and frequent keynote speaker at professional conferences and healthcare meetings.
Seth lives in Manhattan with his wife, Cara Zelas, who is the author of the children’s book series “The Big World of Little Dude.”
Wayne Eskridge
CEO
Fatty Liver Foundation
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Wayne Eskridge
CEO
Fatty Liver Foundation
Wayne Eskridge, an electrical engineer from the University of Idaho, worked in software and electronics through a 50 year professional career. He served in many technical and managerial roles beginning as a computer programmer, through multiple levels of technical and managerial positions in businesses of all sizes. He held executive positions in both public and private corporations with worldwide responsibilities, and from startups to Fortune 500 firms. He was recently appointed as a member of the AASLD Patient Advisory Group, which represents the patient community to the medical professional society.
Eskridge was first diagnosed with liver disease in 2010 and, as a result of his own experiences, he became aware of an acute need for an educational resource from a patient perspective. At the core of his motivation is the fact that an estimated 100 million Americans already have fatty liver disease and are unaware of it. While there is currently no medical treatment for NAFLD/NASH, lifestyle changes can be effective. Prevention through education is the only practical solution today. His desire to help others avoid his experiences led him to the decision to become a patient advocate and to create the Fatty Liver Foundation
November 6th 2020
Insights From the Exchange