The Marfan Foundation
| File:Marfan Foundation logo.png | |
| Founded | 1981 |
|---|---|
| Founder | Priscilla Ciccariello and Dr. Reed E. Pyeritz |
| Focus | Marfan Syndrome |
| Location | |
Area served | USA |
Key people | John McGrath, President and CEO |
| Revenue | US$2.854 million (2013)[1] |
| Website | [1] |
The Marfan Foundation (formerly National Marfan Foundation, NMF) is a non-profit organization in the United States established to raise awareness and promote research for treatment of Marfan Syndrome. The Foundation provides information about Marfan syndrome and funds research for the purposes of saving lives and improving the quality of life for people with the genetic disorder. The Foundation also engages in legislative lobbying for Marfan syndrome research.[2]
History
The Foundation was established in 1981 by geneticist Reed E. Pyeritz and Priscilla Ciccariello, who lost a husband and son to the disorder.[3] In addition to providing grants for research into Marfan syndrome, the foundation raises awareness of the condition, which often goes undiagnosed. The Foundation hosts an annual conference, has dozens of chapters and support groups across the US, and sponsors fund-raising events. Carolyn Levering became the Marfan Foundation’s first President & CEO in 1994. She announced her retirement in early 2014. John McGrath, formerly Chief Executive Director of Easter Seals of New York, has been hired as the new President & CEO. Before it began using the current name, the organization was known as the "National Marfan Foundation."[4]
Present day
The Marfan Foundation operates under the guidance of its Board of Directors, which consists of “a diverse group of business leaders and long-time Foundation members.” The Foundation also has a Professional Advisory Board consisting of physicians and other health care professionals, and is currently chaired by Alan C. Braverman, MD of Washington University School of Medicine. The Marfan Foundation has a separate Scientific Advisory Board, currently chaired by Craig T. Basson, MD, PhD of Novartis Institutes for Biomedical Research. The late geneticist Victor A. McKusick was also a member of the Foundation’s Scientific Advisory Board.
See also
References
- ^ "Charity Navigator Rating - Marfan Foundation". Charity Navigator. Retrieved 2014-09-14.
- ^ "How We Help". Marfan Foundation. Retrieved 2014-09-14.
- ^ "Celebrate National Marfan Foundation's 30th Anniversary by Voting in Chase Community Giving". LongIsland.com. Retrieved 2014-09-14.
- ^ "The Marfan Foundation Adopts New Brand to Better Reflect its Mission for Marfan Syndrome and Related Disorders". PRWeb. August 5, 2013. Retrieved 2014-09-14.
External links
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