Progeria Research Foundation

The Progeria Research Foundation (PRF) is a non-profit organization dedicated to developing treatments and, ultimately, a cure for progeria, a congenital disorder. The Foundation was established in 1999 by the family and friends of Sam Berns, a child with progeria, including Dr. Leslie Gordon and Dr. Scott Berns, his parents, and Audrey Gordon, his aunt.[1]

From their website, the Foundation's mission statement is: "To discover treatments and the cure for Progeria and its aging related disorders."

In 2003, The Progeria Research Foundation helped to discover the gene mutation that causes progeria and developed a diagnostic test for it.[1][2] In 2020 the American Food and Drug Administration approved the use of lonafarnib[3] in children with the disease based on research and funding provided by the Foundation. It is the first and only certified medical protocol for the disease. [4]

One of PRF's major campaigns is Find the Other 150, the goal of which is to identify and diagnose as many progeria patients as possible globally.

References
  1. Moore, Keith. Old at Age 3: The Story of Zachary Moore Old At Age 3, 2007 ISBN 061516062X, pp. 11–13
  2. Klatz, Ronald. The New Anti-aging Revolution: Stopping the Clock for a Younger, Sexier, Happier You! ReadHowYouWant.com, 2009. ISBN 1458716228, p. 274
  3. "FDA Approves Drug for Progeria, a Rare Disease Causing Rapid Aging in Children". AJMC. Retrieved 2021-01-17.
  4. Gordon, Leslie B.; Shappell, Heather; Massaro, Joe; D’Agostino, Ralph B.; Brazier, Joan; Campbell, Susan E.; Kleinman, Monica E.; Kieran, Mark W. (2018-04-24). "Association of Lonafarnib Treatment vs No Treatment With Mortality Rate in Patients With Hutchinson-Gilford Progeria Syndrome". JAMA. 319 (16): 1687. doi:10.1001/jama.2018.3264. ISSN 0098-7484.


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