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The Progeria Research Foundation, Inc.

The mission of The Progeria Research Foundation is to discover treatments and the cure for Hutchinson-Gilford Progeria Syndrome and its aging-related disorders, including heart disease. OUR VISION: A world in which every child with Progeria is cured.

http://www.progeriaresearch.org Tax ID 04-3460220

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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.

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 and 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.

* 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.