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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]
Marfan syndrome (MFS) is a multi-systemic genetic disorder that affects the connective tissue. [ 6 ] [ 7 ] [ 1 ] Those with the condition tend to be tall and thin, with long arms, legs , fingers, and toes . [ 1 ]
Schiavelli was honorary co-chair of the National Marfan Foundation, an organization that serves those affected by Marfan syndrome, a condition that Schiavelli had. [4] Schiavelli also performed in a few video games, including Emperor: Battle for Dune (as Harkonnen Mentat Yanich Kobal) and as Dr. Hellman in the video game Corpse Killer.
This page was last edited on 7 December 2024, at 09:29 (UTC).; Text is available under the Creative Commons Attribution-ShareAlike 4.0 License; additional terms may apply.
Larson may have had an undiagnosed case of Marfan syndrome, which increases the risk of aortic dissection; the possibility was publicly promoted by the National Marfan Foundation to raise awareness about the condition, at the urging of the New York State Health Department. [26]
Reinking's son has Marfan syndrome, and Reinking worked with the Marfan Foundation, which is dedicated to raising awareness of the disease. She produced the 2009 documentary In My Hands: A Story of Marfan Syndrome. [36]
The Marfan Foundation’s 2017 Distinguished Research Award at the Foundation’s Heartworks St. Louis [3] References This page was last edited on 27 May ...
Malan syndrome is defined by initial overgrowth and mild-to-severe intellectual disability.Almost all individuals with Malan syndrome display above-average height, weight, and head circumference in early life, but only one-third of adults with Malan syndrome are >2 standard deviations above the mean.