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
- ^ a b Moore, Keith. Old at Age 3: The Story of Zachary Moore Old At Age 3, 2007 ISBN 061516062X, pp. 11–13
- ^ Klatz, Ronald. The New Anti-aging Revolution: Stopping the Clock for a Younger, Sexier, Happier You! ReadHowYouWant.com, 2009. ISBN 1458716228, p. 274
- ^ "FDA Approves Drug for Progeria, a Rare Disease Causing Rapid Aging in Children". AJMC. Retrieved 2021-01-17.
- ^ 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.
External links
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