The Marfan Foundation

The Foundation was established in 1981 by Priscilla Ciccariello, who lost a husband and son to the disorder, and Reed E. Pyeritz, MD, a geneticist at Johns Hopkins Hospital.{{cite web| url = http://www.longisland.com/articles/05-20-11/celebrate-national-marfan-foundations-30th-anniversary-by-voting-in-chase-community-giving.html?print=1&page=1 | title = Celebrate National Marfan Foundation's 30th Anniversary by Voting in Chase Community Giving | publisher =LongIsland.com| accessdate =2014-09-14}} In addition to providing grants for research on Marfan syndrome, the foundation raises awareness of the condition, which often goes undiagnosed, among health care providers and the public. The Foundation hosts an annual conference, has dozens of chapters and support groups across the U.S., and sponsors fundraising events. Carolyn Levering became the Marfan Foundation's first President and CEO in 1994. She announced her retirement in early 2014. Before it began using the current name, the organization was known as the National Marfan Foundation.{{cite web| url = https://www.prweb.com/releases/the_marfan_foundation_adopts_new_brand_to_better_reflect_its_mission_for_marfan_syndrome_and_related_disorders/prweb10996983.htm | title = The Marfan Foundation Adopts New Brand to Better Reflect its Mission for Marfan Syndrome and Related Disorders | publisher = PRWeb | date = August 5, 2013 | access-date =2014-09-14}}

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."{{cite web| url =http://www.marfan.org/about-us/team| title =Boards and Staff | publisher=The Marfan Foundation| accessdate =2014-09-16}} 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.

In February 2020, The Walk for Victory, a series of annual national walks which benefits The Marfan Foundation, raises awareness and funds for Marfan syndrome. The walk was held on February 29 at TeWinkle Park in Costa Mesa, Southern California, and on February 9 at T.Y. Park in Hollywood, Florida.{{Cite web|last=Padron|first=Mayte|date=2020-01-24|title=Local 10 is walking for The Marfan Foundation|url=https://www.local10.com/news/local/2020/01/24/local-10-is-walking-for-the-marfan-foundation/|access-date=2020-09-08|website=WPLG|language=en}}{{Cite web|first= |last=|date=2020-02-29|title=Walk for Victory at TeWinkle Park to honor Rare Disease Day|url=https://www.latimes.com/socal/daily-pilot/news/story/2020-02-28/walk-for-victory-at-tewinkle-park-to-honor-rare-disease-day|access-date=2020-09-08|website=Daily Pilot|language=en-US}}

• Marfan syndrome
• Connective tissue disease

{{Reflist}}

• {{Official website|https://marfan.org/}}
• [https://www.marfanworld.org/ Marfan World]

{{DEFAULTSORT:Marfan Foundation}}

Category:Health charities in the United States

Category:Organizations established in 1981

Category:1981 establishments in New York (state)

Category:Charities based in New York (state)

Category:Medical and health organizations based in New York (state)