Personalized Medicine and the Patient

Edward Abrahams, Ph.D., is the President of PMC. Representing innovators, scientists, patients, providers and payers, PMC promotes the understanding and adoption of personalized medicine concepts, services and products for the benefit of patients and the health system. It has grown from its original 18 founding members in 2004 to more than 225 today.

Alan Balch is the CEO of the Patient Advocate Foundation and the National Patient Advocate Foundation. Alan has nearly 15 years of executive leadership in the nonprofit sector, with an emphasis on consensus-building and collaboration. Prior to joining NPAF, he served as the Vice President of the Preventive Health Partnership, a national health promotion collaboration between the American Cancer Society, the American Diabetes Association, and the American Heart Association. Prior to his work with the Preventive Health Partnership, Alan was the Executive Director of Friends of Cancer Research.

Cynthia A. Bens, Senior Vice President, Public Policy, Personalized Medicine Coalition, leads the Coalition’s policy development and government relations efforts and serves as its primary liaison with Congress and federal regulators. In collaboration with PMC’s Senior Vice President for Science Policy Daryl Pritchard, Ph.D., Bens is responsible for implementing research, regulatory, and reimbursement policy strategies that promote the understanding and adoption of personalized medicine concepts, services and products to benefit patients and health systems.

In 2006, Rachel Brummert was harmed by a fluoroquinolone antibiotic. She suffered severe adverse reactions, about which she was never warned. Rachel has channeled her frustration into advocating for others who have been harmed by a pharmaceutical drug or medical device, educating others, analyzing research, and effecting policy change. Her patient safety work led her to becoming a contributor for Drug Watch and Medshadow Foundation. She also serves as a Special Government Employee for the U.S. Food and Drug Administration and as the Communications Lead for the American Society of Pharmacovigilance.

Kevin Conroy is the Chief Executive Officer, President, and Chairman of the Board of Exact Sciences. Mr. Conroy has led Exact Sciences through the development, clinical study, regulatory approval, and commercialization of its non-invasive colorectal cancer screening test, Cologuard®. In 2019, Exact Sciences’ acquisition of Genomic Health united two of the industry’s strongest brands, Cologuard and Oncotype DX®, and established the company’s position as a global leader in advanced cancer diagnostics. The company is working to improve screening, early detection, and treatment guidance throughout the cancer continuum.

Donna R. Cryer is Founder and CEO of the Global Liver Institute, the premier patient-driven liver health nonprofit organization operating with offices and partnerships across five continents. Moved by her own experience as a 27-year liver transplant recipient, Mrs. Cryer serves as a fierce advocate for the transformative potential of patient engagement in health policy, research, data, and system design. Her expertise and effectiveness in advancing the voice of patients in defining and designing equitable health care has been recognized by the United States Congress and the White House.

Geoffrey S. Ginsburg, M.D., Ph.D., is the Chief Medical and Scientific Officer of the All of Us Research Program at the U.S. National Institutes of Health. He leads the Division of Medical and Scientific Research and is responsible for helping to set the scientific vision and strategy for the program. Prior to joining All of Us, Ginsburg was the Founding Director of the Center for Applied Genomics & Precision Medicine in the Duke University School of Medicine, where he pioneered translational genomics and the development of novel diagnostics. Throughout his career, Ginsburg has demonstrated a strong commitment to interdisciplinary science and innovation, with work spanning oncology, infectious diseases, cardiovascular disease, and metabolic disorders.

Mike comes from a career in public policy, international development, and strategy. Previous roles have included establishing a new program at New America, a D.C. think tank, budget & planning at both the Gates Foundation and Emerson Collective, health care consulting at BCG, developing world university support for the World Bank Group, managing a refugee program for the International Catholic Migration Commission in Zimbabwe, and teaching math in Peace Corps Namibia. Mr. Graglia has an M.B.A. from Columbia University, where he was a Bronfman Fellow, and an M.A. in Southeast Asian studies from Johns Hopkins School of Advanced International Studies.

Dr. Robert C. Green sees patients in an adult genetics clinic and participates in gene discovery research as a member of the Brigham Genomic Medicine Gene Discovery Program. He has over 20 years of experience directing large multi-disciplinary and multi-institutional projects that have generated empirical data around the medical, behavioral, and economic impact of utilizing genomics in the practice of medicine. He presently serves as a member of the Cancer Risk, Prevention and Early Detection program organized by the Dana Farber Cancer Institute and Harvard Cancer Center.

Deanna Darlington is an advocacy relations professional with more than 25 years of experience in government and external affairs, patient advocacy, policy, reimbursement consulting, and related fields. She specializes in engaging patient advocacy organizations on access and policy issues, which includes a focus on health disparities for vulnerable patient populations. Deanna works closely with advocates on key policy issues that support dialogue and engagement to support patient access to quality care and value.

When Candace Henley was diagnosed with colorectal cancer in 2003, she was a 35-year-old single mother raising five daughters. She found herself feeling as though she was falling through the cracks in the health care system. But Henley made a full recovery and took what she learned from her arduous journey to help others. In 2010, she founded The Blue Hat Foundation for Colorectal Cancer Awareness, an organization committed to supporting underserved community members who don’t have access to cancer prevention resources.

Walter is passionate about making a difference for patients. He spends his days focused on areas where genetics and genomics bring new insight into disease biology. Walter works where science meets business and strategy, enabling insights from the laboratory to become the next generation of medicines that can change lives. He is enthusiastic about launching companies with emphatic, truly patient-centric cultures that effectively and efficiently execute drug discovery. He places priority on taking the time to listen to the patients whom Third Rock endeavors to help, recognizing that the value the company aims to create is defined by the difference it can make in patients’ lives.

Driven by the passion to make an impact in patient care and family engagement, Sarah Krüg has held a variety of roles within health care across sectors. Sarah is the Founder of the Health Collaboratory, a global innovation hub that paves the path for collaboration in health care with a focus on amplifying the voice of the patient and caregiver in the design, development, and continuous improvement of innovations. Sarah envisions a world in which patients and caregivers are recognized as change agents in health care and are empowered as active partners in their care in collaboration with their health care teams.

Dr. Lillard is a prominent immuno-biologist who develops biologics to treat chronic diseases. Most recently, his laboratory research involves dissecting the molecular mechanisms of chemokine-mediated solid tumors and heme malignancy progression using clinically annotated DNA/RNA sequencing data. His research contributions span multiple disciplines including oncology, vaccine development, biodefense, and neuro-inflammation. Dr. Lillard’s cumulative peer-reviewed funding principally directed over his scientific career exceeds $30 million. He has authored more than 300 scientific communications, which have been cited over 6,000 times.

Dr. Howard McLeod is an internationally recognized expert in precision medicine, having made novel contributions at the discovery, translation, implementation, and policy levels. He is the Medical Director for Precision Medicine at the Geriatric Oncology Consortium. Dr. McLeod chaired the NHGRI eMERGE network external scientific panel for the past decade and was a recent member of both the FDA Committee on Clinical Pharmacology and the NIH Human Genome Advisory Council. Dr. McLeod has been recognized as a Fellow of both the American Society of Clinical Oncology and the American College of Clinical Pharmacy.

Dr. Siddhartha Mukherjee’s Pulitzer Prize-winning book, The Emperor of All Maladies: A Biography of Cancer, tells the story of cancer from its first description in an ancient Egyptian scroll to the gleaming laboratories of modern research institutions. A three-part documentary series based on the book, directed by Barak Goodman and executive produced by Ken Burns, aired on PBS stations in 2015. The film interweaves a sweeping historical narrative with intimate stories about contemporary patients and an investigation into the latest scientific breakthroughs.

Dr. Mukherjee was born in New Delhi, India. He holds a B.S. in biology from Stanford University, a D.Phil. in immunology from Oxford University, where he was a Rhodes Scholar, and an M.D. from Harvard Medical School. He completed his internal medicine residency and an oncology fellowship at Massachusetts General Hospital. Dr. Mukherjee is an Assistant Professor of Medicine at Columbia University Medical Center. He lives in Manhattan with his wife, artist Sarah Sze, and their two daughters.

John M. O’Brien, Pharm.D., is the President and CEO of the National Pharmaceutical Council, which sponsors and participates in research on the appropriate use of pharmaceuticals and the clinical and economic value of pharmaceutical innovation. Dr. O’Brien is responsible for overseeing NPC’s policy research and communications capacity, partnerships with other health care organizations, and strategic vision. 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. He has also held senior policy positions in the life sciences and managed care industries.

Susan Perry is the Head of Strategy and Operations at Massachusetts-based regional health insurer Point32Health. Known for innovative partnerships in personalized medicine, Point32Health is committed to providing high-quality and affordable health care, improving the health and wellness of its members, and creating healthier communities across the country.

As the Chief Operating Officer of the Personalized Medicine Coalition and the co-leader of PMC’s More Than A Number initiative, Faswilla Sampson optimizes the Coalition’s systems, processes and personnel while spearheading its efforts to empower patients to ask questions about personalized medicine prevention and treatment options. Sampson also oversees strategic planning and evaluates results to ensure that departmental and organizational objectives are met and are in line with the needs and mission of the organization.

Dr. Syngal is a practicing gastroenterologist at the Dana Farber Cancer Institute. As the Institute’s Strategic Planning Director for Prevention and Early Detection, she is also spearheading the next steps for one of the first clinical cancer genetics and prevention programs in the world. Dr. Syngal received her M.D. from McGill University in 1990 and completed her clinical training in internal medicine and gastroenterology at Brigham and Women’s Hospital. She received her M.P.H. from Harvard School of Public Health and completed a research fellowship at the Harvard Education Program in Cancer Prevention.

Julia Vitarello’s life has taken her from Washington, D.C., where she grew up, to Amherst College, where she pursued a liberal arts degree, and then to Italy, where she lived and worked for many years. She finally settled in Boulder, Colorado, where she headed a small company and started a family. Travel, language, outdoor sports, and playing with her kids were her passions. But Julia’s life took a drastic turn in December 2016 when her then six-year-old daughter Mila was diagnosed with a rare and fatal genetic condition — Batten disease.

Personalized Medicine Coalition Board Chairman Jay G. Wohlgemuth, M.D., is Chief Medical Officer and Senior Vice President, Research & Development and Medical, for Quest Diagnostics. Based at the Quest Diagnostics Nichols Institute in San Juan Capistrano, California, Dr. Wohlgemuth is responsible for Research & Development, Medical Affairs and Medical/Laboratory Quality. He is also responsible for improving outcomes for employees who use Quest’s health benefits.

Dr. Yu is a neurologist and researcher in the Division of Genetics and Genomics at Boston Children’s Hospital, an Assistant Professor at Harvard Medical School, and an Associate Member of the Broad Institute of MIT and Harvard. His research group focuses on autism, neurobiology, and genomic medicine. Dr. Yu is passionate about finding ways to bring genomic tools to the bedside to help care for patients with genetic disorders. His research initiatives range from the deployment of genome sequencing in the neonatal intensive care unit to the design and delivery of genome-guided therapeutics for sick children.