Progeria Research Foundation
{{Short description|American nonprofit organization}}
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.Moore, Keith. [https://books.google.com/books?id=sG4GjTOuc24C&pg=PA12 Old at Age 3: The Story of Zachary Moore] Old At Age 3, 2007 {{ISBN|061516062X}}, pp. 11–13
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.Klatz, Ronald. [https://books.google.com/books?id=fhob01za3PcC&pg=PA274 The New Anti-aging Revolution: Stopping the Clock for a Younger, Sexier, Happier You!] ReadHowYouWant.com, 2009. {{ISBN|1458716228}}, p. 274 In 2020 the American Food and Drug Administration approved the use of lonafarnib{{Cite web|title=FDA Approves Drug for Progeria, a Rare Disease Causing Rapid Aging in Children|url=https://www.ajmc.com/view/fda-approves-drug-for-progeria-a-rare-disease-causing-rapid-aging-in-children|access-date=2021-01-17|website=AJMC}} 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.{{Cite journal|last=Gordon|first=Leslie B.|last2=Shappell|first2=Heather|last3=Massaro|first3=Joe|last4=D’Agostino|first4=Ralph B.|last5=Brazier|first5=Joan|last6=Campbell|first6=Susan E.|last7=Kleinman|first7=Monica E.|last8=Kieran|first8=Mark W.|date=2018-04-24|title=Association of Lonafarnib Treatment vs No Treatment With Mortality Rate in Patients With Hutchinson-Gilford Progeria Syndrome|url=https://jamanetwork.com/journals/jama/fullarticle/2679278|journal=JAMA|language=en|volume=319|issue=16|pages=1687|doi=10.1001/jama.2018.3264|issn=0098-7484|doi-access=free|pmc=5933395}}
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
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External links
- {{Official website}}
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Category:Organizations established in 1999
Category:1999 establishments in the United States
Category:Medical and health organizations based in Massachusetts
Category:Rare disease organizations
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