In the summer of 1998, Dr. Leslie Gordon and Dr. Scott Berns found out that their son Sam, who was then 22 months old, had been diagnosed with Hutchinson-Gilford Progeria Syndrome (“Progeria”), commonly referred to as a “premature aging” syndrome. It quickly became apparent to Sam’s parents that there was an enormous lack of medical information and resources dedicated to Progeria. They recognized that there was no place for these children to go for medical help, no place for parents or doctors to turn for information, and no source of funding for researchers who wanted to do Progeria research. The lack of information available to families, combined with the lack of research and research-funding opportunities inspired Sam’s family, together with their friends and colleagues, to launch The Progeria Research Foundation, Inc. (“PRF”), the only non-profit organization in the world dedicated to Progeria research.
Sam passed away on January 10, 2014, leaving a legacy of inspiration that now drives PRF and its supporters to continue the quest for a cure, with more determination than ever. Click here to learn more about this remarkable young man.
Together with caring, dedicated board members and other generous volunteers, The Progeria Research Foundation was created to raise awareness, educate and help the families, their doctors, researchers and the general public about Hutchinson-Gilford Progeria Syndrome. In addition, PRF funds medical research and runs research-related programs specifically aimed at finding the cause*, treatments, and cure for this syndrome.
From its inception to 2016, PRF benefited from the leadership of Attorney Audrey Gordon, Sam’s aunt, who served as the organization’s President and Executive Director, and now serves as its Director of Development.
Did You Know?
With the exception of our staff, everyone involved with PRF is a volunteer! Our Board of Directors, Clerk, Treasurer, committee members, translators, fund-raisers, etc. all devote their time, energy and talents to furthering our mission without pay. As a result, our administrative costs are very low. This leaves more money to devote to medical research and raising public awareness, which ultimately lead to finding a cure for Progeria.
Leslie B. Gordon, MD, PhD, is PRF’s Medical Director. She is also the Principal Investigator of PRF’s research-related programs: The PRF International Registry, Cell & Tissue Bank, Medical & Research Database, and Diagnostics Testing Program, and co-author on the historic Progeria gene finding and treatment discovery*.
* Thanks to PRF’s efforts, in April 2003 PRF and the National Institutes of Health announced that the cause of Progeria, a mutation in the LMNA gene, was found, and in September 2012, the first-ever treatment was discovered.
There is much work to be done and little resources with which to do so. We cannot do it alone. With your support, the cure will be discovered for these wonderful children.