As we kick off the new year, the EveryLife Foundation for Rare Diseases is excited to welcome a new Chair to our Board of Directors, as well as two new Board Members.
Amy Gaviglio MS, CGC takes over as Board Chair in 2026 after serving as Interim Vice Chair the last several months. Amy is a certified genetic counselor and public health genetics and genomics consultant who has been working on rare disease and newborn screening for the past 18 years. She is currently a consultant, contractor, and advisor for several regional, national, and international organizations in our community.
Joining the EveryLife Foundation’s Board of Directors are Eric Gascho and James Valentine, JD, MHS.
Eric is a Vice President at CRD Associates, a Washington-based government relations firm specialized in public health and health care policy. He also serves as the Executive Director of the Coalition for Health Funding, the oldest and largest nonprofit alliance working to preserve and strengthen public health investments. Prior to joining CRD Associates and CHF, Eric spent 15 years with the National Health Council, most recently as Senior Vice President of Policy and Government Affairs. While serving as a professional member of the rare disease community for nearly two decades, Eric’s connection to our community intensified in 2025 when his son was born with a rare, unspecified neurogenetic condition that led to his passing at 8 weeks old.
James is a Director at Hyman, Phelps & McNamara, P.C., where he assists medical product industry and patient advocacy organization clients in a wide range of regulatory matters relating to new drug and biologic development and approval. In this capacity, James has helped secure FDA approvals for many new drugs across a wide range of therapeutic areas and treatment modalities, including ERT, ASO, mRNA, and cell and gene therapy. James is also a champion for the patient’s voice in drug development and review. Before joining the firm in 2014, James worked in the FDA Office of Special Health Issues where he facilitated patient input in benefit-risk decision-making.
Eric and James join current Board Members Ritu Baral, Jennifer Bernstein, Merrill Friedman, Stephen C. Groft, Sarah-Lloyd Stevenson, and Shandra Trantham, as well as Michael Pearlmutter, CEO of the EveryLife Foundation.
We also celebrate the contributions of several extraordinary members who transitioned off the Board at the end of 2025. Each of these leaders in the rare disease community left an indelible mark on the evolution of our organization: former Board Chair Frank Sasinowski, MS, MPH, JD; former Board Chair Vicki Seyfert-Margolis; and former Board Member Lisa Carlton, PhD.
According to Michael, “2026 promises to be an exciting year of evolution and change for the EveryLife Foundation for Rare Diseases. We will greatly benefit from Amy’s leadership, and we couldn’t be luckier to have Eric and James join the team for our next chapter. And, on behalf of the rare disease community, we are also eternally grateful to Frank, Vicki, and Lisa for the contribution each of them made during their tenure with EveryLife. We know that they will continue to represent our community as we strive to fulfill our mission.”
To learn more about our Board of Directors, visit our website.
