The Marfan Foundation Contents History Present day See also References External links Navigation menu"How We Help""Celebrate National Marfan Foundation's 30th Anniversary by Voting in Chase Community Giving""The Marfan Foundation Adopts New Brand to Better Reflect its Mission for Marfan Syndrome and Related Disorders""Boards and Staff"Official websiteInternational Federation of Marfan Syndrome Organizations

Health charities in the United StatesOrganizations established in 19811981 establishments in New York (state)Charities based in New York (state)Medical and health organizations based in New York (state)


non-profit organizationUnited StatesMarfan syndromeconnective tissueJohns Hopkins HospitalgrantsWashington University School of MedicineNovartisVictor A. McKusick



















The Marfan Foundation
Founded1981
FounderPriscilla Ciccariello, Reed Pyeritz
FocusMarfan syndrome
Location
  • Port Washington
Area served
United States of America
Revenue
8,321,203 United States dollar
Websitehttp://www.marfan.org

The Marfan Foundation (formerly National Marfan Foundation, NMF) is a non-profit organization in the United States established to raise awareness and promote research on treatment of Marfan syndrome and related disorders. The Foundation provides information about Marfan syndrome and funds research for the purposes of saving lives and improving the quality of life for people affected by the condition which is a genetic connective tissue disorder. The Foundation also lobbies Congress to fund Marfan syndrome research and engages in its own fundraising activities.[1]




Contents





  • 1 History


  • 2 Present day


  • 3 See also


  • 4 References


  • 5 External links




History


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.[2] 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 & 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."[3]



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."[4] 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


  • Marfan syndrome

  • Connective tissue disease


References




  1. ^ "How We Help". The Marfan Foundation. Retrieved 2014-09-14..mw-parser-output cite.citationfont-style:inherit.mw-parser-output .citation qquotes:"""""""'""'".mw-parser-output .citation .cs1-lock-free abackground:url("//upload.wikimedia.org/wikipedia/commons/thumb/6/65/Lock-green.svg/9px-Lock-green.svg.png")no-repeat;background-position:right .1em center.mw-parser-output .citation .cs1-lock-limited a,.mw-parser-output .citation .cs1-lock-registration abackground:url("//upload.wikimedia.org/wikipedia/commons/thumb/d/d6/Lock-gray-alt-2.svg/9px-Lock-gray-alt-2.svg.png")no-repeat;background-position:right .1em center.mw-parser-output .citation .cs1-lock-subscription abackground:url("//upload.wikimedia.org/wikipedia/commons/thumb/a/aa/Lock-red-alt-2.svg/9px-Lock-red-alt-2.svg.png")no-repeat;background-position:right .1em center.mw-parser-output .cs1-subscription,.mw-parser-output .cs1-registrationcolor:#555.mw-parser-output .cs1-subscription span,.mw-parser-output .cs1-registration spanborder-bottom:1px dotted;cursor:help.mw-parser-output .cs1-ws-icon abackground:url("//upload.wikimedia.org/wikipedia/commons/thumb/4/4c/Wikisource-logo.svg/12px-Wikisource-logo.svg.png")no-repeat;background-position:right .1em center.mw-parser-output code.cs1-codecolor:inherit;background:inherit;border:inherit;padding:inherit.mw-parser-output .cs1-hidden-errordisplay:none;font-size:100%.mw-parser-output .cs1-visible-errorfont-size:100%.mw-parser-output .cs1-maintdisplay:none;color:#33aa33;margin-left:0.3em.mw-parser-output .cs1-subscription,.mw-parser-output .cs1-registration,.mw-parser-output .cs1-formatfont-size:95%.mw-parser-output .cs1-kern-left,.mw-parser-output .cs1-kern-wl-leftpadding-left:0.2em.mw-parser-output .cs1-kern-right,.mw-parser-output .cs1-kern-wl-rightpadding-right:0.2em


  2. ^ "Celebrate National Marfan Foundation's 30th Anniversary by Voting in Chase Community Giving". LongIsland.com. Retrieved 2014-09-14.


  3. ^ "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.


  4. ^ "Boards and Staff". The Marfan Foundation. Retrieved 2014-09-16.




External links


  • Official website

  • International Federation of Marfan Syndrome Organizations


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