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.

David Bakelman is the CEO of the National Pancreas Foundation. Bakelman has a rich history in growing nonprofits through his senior-level leadership over the past 15 years. Most recently, David served as CEO of The Pap Corps – Champions of Cancer Research and raised funds for cancer research at the Sylvester Comprehensive Cancer Center – University of Miami.

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.

Dr. Tomasz (Tom) Beer has served as Chief Medical Officer for Multi-Cancer Early Detection at Exact Sciences since August 2022. Dr. Beer also serves as Adjunct Professor of Medicine at the Oregon Health and Science University (OHSU) Knight Cancer Institute, where he sees men with prostate cancer. Until August of 2022, Dr. Beer was the Grover C. Bagby Endowed Chair for Prostate Cancer Research at the OHSU Knight Cancer Institute, where he led the Prostate Cancer Research Program encompassing basic research, translational research, clinical trials of novel therapeutic strategies in prostate cancer, and studies aimed at enhancing cancer survivorship.

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.

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.

Dr. William “Bill” Dalton is the Founder and Executive Chairman of M2Gen, a national biotechnology subsidiary of the Moffitt Cancer Center. Dr. Dalton is also the past President, CEO, and Center Director of the Moffitt Cancer Center, a National Cancer Institute-Designated Comprehensive Cancer Center in Tampa, Florida. In 2014, the Moffitt Cancer Center and the James Cancer Center at the Ohio State University founded the cancer center alliance called ORIEN (Oncology Research Information and Exchange Network) with the goal of accelerating cancer research discovery by sharing information and promoting collaborative learning through partnerships.

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.

Dr. Escontrías’ expertise is centered in the areas of community and patient engagement, coalition building, health policy, and evidence-based research. Over the span of his career, Dr. Escontrías has worked with local and state governments, as well as non-profit organizations in the areas of public policy, and disease prevention and health promotion to improve the health and lives of patients and communities. By the time Dr. Escontrías joined the National Health Council (NHC) in April 2022 as its Vice President of Research, Education, and Programs, he’d already spent 15 years building a career fighting systemic health care inequalities in historically underrepresented communities. Born in the northern México border community of Ciudad Juárez, Dr. Escontrías is a proud first-generation immigrant, boasting his bilingual and bicultural background as one of his greatest strengths. Backed up by his wealth of bicultural experiences, from his earliest days as a child in México, to his years organizing community outreach projects, Dr. Escontrías is thrilled to be contributing to the NHC’s patient-centered advocacy and policy engagement efforts. Dr. Escontrías earned a Bachelor of Science in molecular and cellular biology, a Master of Public Health in epidemiology, and a Doctor of Public Health in health policy and management, all from the University of Arizona.

Lori Frank, Ph.D., is Senior Vice President for Research, Policy, and Programs with the New York Academy of Medicine. Her work focuses on inclusion of community and other stakeholder perspectives in research and health care. She is Past President of the International Society for Quality of Life Research, a professional society devoted to health outcomes assessment, and she serves on the Board of the Personalized Medicine Coalition and on the Memory Screening Advisory Board of the Alzheimer’s Foundation of America. Dr. Frank is also an affiliated adjunct Senior Scientist with the RAND Corporation and she completed her Health and Aging Policy Fellowship at the National Institute on Aging, through the Congressional Fellowship Program, American Political Science Association.

She founded and served as Program Director of the Evaluation and Analysis Program at the Patient-Centered Outcomes Research Institute (PCORI), establishing a research program to examine stakeholder engagement, along with survey research and portfolio analysis functions. Prior to joining PCORI she served as Executive Director and Senior Research Leader, Center for Health Outcomes Research, with MEDTAP International/United BioSource Corporation, where she led the scientific and financial performance of the Center, overseeing international operations.  She founded and served as principal investigator of the Cognition Initiative with the Critical Path Institute Patient-Reported Outcome Consortium, a multi-sponsor patient-reported outcome measure development program focused on dementia. Her outcomes research focus began with her clinical policy work for the Sheppard Pratt Psychiatric Hospital.

Her career has focused on patient-reported outcomes and the psychological, ethical and legal aspects of medical treatment decision-making. She has held research and teaching positions with Georgetown University Department of Psychiatry, the National Institute on Aging, Medimmune LLC/AstraZeneca, and the Veteran’s Administration. She completed postdoctoral training in geriatric mental health services research with the VA Health Services Research and Development program. Her Ph.D. is in Human Development/Gerontology from the Pennsylvania State University and her M.A. is in biopsychology from the Johns Hopkins University.

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.

Robert Green, MD, MPH is a board-certified medical geneticist and Professor of Medicine at Harvard Medical School who directs the Genomes2People Research Program at Mass General Brigham, Ariadne Labs and the Broad Institute.

Dr. Green’s empirical research and policy development is accelerating the implementation of genomic and precision medicine. His work has established the safety and feasibility of disclosing various forms of genetic risk information, assessed the impact of whole genome sequencing in primary care, created the concept of aggregate penetrance of genomic variants in a prospective population cohort and provided early data on the clinical utility and cost-effectiveness of genomic sequencing in healthy adults (the MedSeq Project), and in active duty military personnel (the MilSeq Project). Most recently Dr. Green is leading the first empirical trial of comprehensive sequencing in healthy newborn infants, the NIH-funded BabySeq Project.

Dr. Green established the world’s first academically-affiliated, family-oriented Preventive Genomics Clinic in Boston and led policy development for returning genomic information to research participants within the Global Alliance for Genomics and Health, the Verily-Google Baseline Project and All of Us Research Program. In 2017, he co-founded the nationwide telegenetics company Genome Medical.

Candace Henley is the Founder and CSO of the Blue Hat Foundation, Inc. The Blue Hat Foundation, Inc. is a grassroots, community-driven, non-profit organization that assists minority and underserved communities with education, information, and access to free screening resources for colorectal cancer through partnerships with healthcare providers, hospital systems, and FQHCs.

Inspired by her 19yr journey as a colorectal cancer survivor, Ms. Henley grew her advocacy to include healthcare equity, health access, genomics, equity in clinical trials, and translational research. She has spoken on topics such as the importance of understanding the history of ethical breaches, human experimentations on minorities, genomic paternalism, and strategies for healthcare providers and academic researchers to apply community engagement and an equity lens in their work.

Ms. Henley is an Adjunct Lecturer at Northwestern University Graduate Program in Genetic Counseling, Psychosocial Issues in Genetic Counseling II, and Anti-Racism in Clinical and Translational Science MSCI. In addition, she has contributed to several peer-reviewed scientific articles on health disparities and health equity research. She has expanded her reach to include an international audience as a patient advocate for Cancer Research UK (CRUK) and a guest lecturer for WELLCOME Genetics.

Pari Johnston leads Genome Canada’s federal advocacy and policy agenda while raising awareness of the organization’s mission and cross-sectoral impact among parliamentarians, senior officials, industry, community partners, and the public. Guided by the belief that genomics can change the world if responsibly and equitably applied, Pari builds strategic partnerships among diverse stakeholders to advance the role and impact of genomics in society. In this capacity, she is closely involved with Genome Canada’s robust actions and commitments to Indigenous truth, reconciliation, and meaningful engagement.

Mr. Knight is a health care professional and a former hemodialysis patient. He received a kidney transplant approximately 14 years ago. He is President of the American Association of Kidney Patients, which is the oldest and largest independent kidney patient organization in the United States.

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.

Sarah Krüg is the CEO of CANCER101, a patient advocacy organization whose mission is to empower patients and their families to navigate their cancer care and partner with their healthcare team to make informed decisions. Sarah is also founder of the Health Collaboratory, a global innovation hub, that’s built on the foundation of advancing health equity, understanding the impact of behavior science, and cultivating trust by amplifying the voice of the patient, care partner and clinician in the co-design of the future of healthcare. The Health Collaboratory is comprised of a network of >300 subject matter experts. The Health Collaboratory has launched various innovations such as Prescription to Learn®, a Health GPS, and the Patient Shark Tank®, among others that have been co-designed with patients. Through the Patient Shark Tank ®, over 25,000 patients and care partners across disease states have evaluated/partnered on innovations across the globe, including technology, education, research, and policy.

She is on the board and past president of the Society for Participatory Medicine, a patient: clinician member driven organization, whose mission is to enable collaborative partnerships between patients and healthcare professionals. She was also on the board of the National Organization for Rare Disorders. Sarah is the author of “A Roadmap to Wellness,” with another book, “Health Confessions,” to launch in 1Q23. She is a global speaker and recently gave a TEDx talk called “The Patient: Doctor Tango”.

She previously held the position of Global Education Director, as well as Patient Advocacy Lead, at Pfizer. She also established the Global Investigator Initiated Research Program at Pfizer. Prior to joining Pfizer, Sarah spearheaded the development of the Disease Management Clinical Pathways and conducted clinical research at Memorial Sloan-Kettering Cancer Center.

Raju Kucherlapati, Ph.D., is the Paul C. Cabot Professor in the Harvard Medical School Department of Genetics. He is also a Professor in the Department of Medicine at Brigham and Women’s Hospital. Dr. Kucherlapati was the first Scientific Director of the Harvard Medical School-Partners Healthcare Center for Genetics and Genomics. His research focuses on gene mapping, gene modification, and cloning disease genes. From 1989 – 2001, Dr. Kucherlapati was the Lola and Saul Kramer Professor of Molecular Genetics and Chairman of the Department of Molecular Genetics at the Albert Einstein College of Medicine in New York.

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.

Tammy McAllister is an operations administrator within Mayo Clinic’s Center for Individualized Medicine. As a strategic and operational leader in the Center, she works to advance the integration of -omic medicine into the Mayo Clinic practice, overseeing an expanse of translational/clinical implementation efforts, including innovative approaches in rare disease diagnostics and therapeutics, large-scale population health projects, genomic training and education, and development of Mayo’s Omics Data Platform.

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.

Josh Ofman, MD, MSHS, is President at GRAIL. Josh also serves on the Board of Directors of Cell BT, Inc, an immuno-therapy company focused on the discovery and development of innovative cancer therapeutics. Previously, Josh spent more than 15 years at Amgen, where he most recently held the role of Senior Vice President, Global Value, Access and Policy. Prior to that, Josh was a faculty member in the Department of Medicine and Health Services Research at University of California, Los Angeles (UCLA) School of Medicine, Cedars-Sinai Medical Center, as well as Senior Vice President of Zynx Health Inc., a subsidiary of Cerner Corp. Josh holds a BA in history and philosophy of science from the University of California, Berkeley, and an MD from the University of California, Irvine, School of Medicine. Josh also has an MSHS from the UCLA School of Public Health.

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.

Sharon Phares, Ph.D., M.P.H., is Chief Scientific 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. Dr. Phares directs NPC’s research strategy and oversees the organization’s research on policy issues, including demystifying pharmaceutical pricing perceptions, addressing challenges of health technology assessments, and examining underlying issues of patient access and affordability.

Daryl Pritchard, Ph.D., is the Senior Vice President of Science Policy at the PMC, where he leads PMC’s efforts to increase awareness and understanding of personalized medicine; identify and address barriers to the adoption of personalized medicine into the health care system; and develop and promote appropriate clinical, health care infrastructure, regulatory and payment policies.

Before coming to PMC, Dr. Pritchard served as the Director of Policy Research at the National Pharmaceutical Council. Prior to joining NPC, he served as the Director of Research Programs Advocacy and Personalized Medicine at the Biotechnology Innovation Organization (BIO).

Dr. Pritchard received his Ph.D. and master’s degree in genetics from the George Washington University, and completed a post-doctoral research fellowship at the Children’s National Medical Center. He was awarded the first American Society of Human Genetics/NHGRI Fellowship in Genetics and Public Policy, where he worked as a health legislative assistant in the House of Representatives.

As the Chief Operating Officer of the Personalized Medicine Coalition and the director 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.

Since 2019, Lindsay Stephens has served as Program Manager and Secretary to the Board at the Personalized Medicine Coalition. Lindsay previously worked as Senior Account Manager at FedBid, Inc., where she created efficiencies in the federal procurement space. She graduated in 2014 from Christopher Newport University with a B.S. in biology and a minor in chemistry.

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.

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.