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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.
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.
Since its inception, PRF has benefited from the leadership of Attorney Audrey Gordon, Sam's aunt, who serves as the organization's President and Executive Director.
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, Sam's mother, is PRF's Medical Director. She is also the Principal Investigator of PRF's three research-related programs: The PRF Cell & Tissue Bank, Medical & Research Database, and Diagnostics Program, and a co-author on the Progeria gene finding, which was published in the leading scientific journal *Nature.
* 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. Click here for more details.
There is much work to be done and little resources with which to do so. We can not do it alone. With your support, there is renewed hope that a cure will be discovered for these wonderful, endearing and gifted children.
*"Recurrent de novo point mutations in lamin A cause Hutchinson-Gilford Progeria Syndrome", Vol. 423, May 15, 2003, Nature.