When a Massachusetts couple, Drs. Leslie Gordon and Scott Berns’ child Sam was diagnosed with Progeria in 1998, they immediately began to collect as much information as they could find on the disease. But they discovered that practically nothing existed. There was no way to definitively test for the disease, no research funding available, and virtually no one advocating for these children. So in early 1999, they gathered family, friends and colleagues and established The Progeria Research Foundation. Sam’s mother is PRF’s Medical Director, responsible for both medical and research efforts for children with Progeria.
In just a few short years, PRF has created and centralized all of the research-related resources needed to propel forward as quickly as possible towards treatments and cure, for all children diagnosed with Progeria worldwide. PRF was the driving force behind the 2003 Progeria gene discovery; created, owns and operates its own medical & research database, cell & tissue bank, and diagnostics testing program; holds bi-annual scientific workshops; funds research grants and clinical drug trials; and provides medical and other support for the families. All of PRF’s programs and accomplishments have made PRF the world leader in Progeria research and education. And as awareness of Progeria, its link to heart disease and aging, and the programs now available for research spreads throughout the world, we move closer to saving the lives of these special children.
PRF was conceived with the vision of a mother who knew that in order to win this race against time for her son and the other children with Progeria, we would have to build the network of research-related needs to encourage Progeria research.
The results have been astounding; PRF has flourished with the support of its dedicated volunteers, staff and donors, catapulting the field of Progeria and its aging-related disorders (such as heart disease and osteoporosis) into a new realm.