Three Rare Disease Patient Advocates Lend New Perspectives, Experience to EveryLife Foundation Board of Directors

The EveryLife Foundation for Rare Diseases is pleased to announce the election of three new members of its board of directors, and the appointment of a new board chair. The new board members and its new chair bring a wealth of professional experience and personal commitment to rare disease advocacy as patients, parents and allies and continue the tradition of strong, patient-led leadership of the Foundation.

Lisa Carlton joined the rare community in 2005 when her Twin Baby A was diagnosed in utero with Tuberous Sclerosis. Ms. Carlton is Vice President of Global Regulatory Affairs at REGaENXBIO Inc., a leading AAV gene therapy company, where she leads a team responsible for delivering high-quality regulatory submissions to advance potential new gene therapies for patients. She has over 25 years of experience in regulatory affairs and medical/technical writing in the government and nonprofit sectors, with the majority of her career spent in the pharmaceutical and biotech industry.

Merrill Friedman leads inclusive policy and advocacy for Elevance Health. Ms. Friedman advances the integration of the independent living philosophy, self-determination, and person-centeredness along with the National Advisory Board (NAB) on Improving Healthcare Services for Older Adults and People with Disabilities six foundational principles throughout policy, programs, individual interactions, and business practices. In addition, she leads strategic partnerships with national and local organizations to advance access, health equity, and inclusive public policy.

Cristina Casanova Might, is the CEO at Welcomed Co. Prior to Welcomed Co, she co-founded and served as executive director of the Undiagnosed Diseases Network Foundation (UDNF). Originally from San Juan, PR, she was drafted onto the front line of the genomic revolution in 2007, when the oldest of her three children was born. One of the trailblazing examples of clinical exome sequencing, Bertrand Might became the first patient in the world diagnosed with the rare disease N-glycanase (NGLY1) deficiency in 2012. His diagnostic odyssey launched his mother into a decade-long journey of rare disease patient advocacy, leadership, research, education, and policy. Unfortunately, Bertrand did not survive the therapeutic odyssey. He passed away just shy of 13 years old in 2020—the same year that Ms. Might was diagnosed with the rare disease generalized myasthenia gravis.

Parent advocate Mark Dant will step away from the board and his role as board chair, as required after serving three consecutive terms.

“I am forever grateful for Mark’s leadership and service to the Foundation. We’ve substantially increased our impact in the patient advocacy movement, providing over two million dollars in grants to the community since 2019, producing game changing publications and expanding programs that amplify the voices of rare patients on Capitol Hill and in statehouses around the country,” said Julia Jenkins, executive director and board president.

Frank J. Sasinowski, MS, MPH, JD, has been appointed Chair of the Foundation’s board of directors, succeeding Mr. Dant.

Mr. Sasinowski is the survivor of a rare cancer and the parent of an adult child with a rare disease. He is a director at Hyman, Phelps & McNamara, PC. Mr. Sasinowski has helped secure U.S. Food and Drug Administration (FDA) approval for hundreds of new drugs, many for rare and serious diseases. He joined the FDA as regulatory counsel for the Center for Drugs and Biologics in 1983, where he was key to implementing the landmark Orphan Drug Act, and later the Hatch-Waxman law.

“It’s a high honor to lead a board so rich in expertise, perspective and personal understanding of the impact of rare disease,” said Mr. Sasinowski. “This board, aided by staff and the patient advocate community, is well positioned to move forward policies that empower rare disease patients and generate expeditious review and approvals of safe, effective and accessible therapies.”

Vicki Seyfert-Margolis, PhD, will become the vice chair of the board.

The complete roster of EveryLife Foundation for Rare Disease board members and their biographies is available at https://www.rareadvocates.org/about-us/.