Mission Statement
The National Marfan Foundation, founded in 1981, is a non-profit voluntary health organization dedicated to saving lives and improving the quality of life for individuals and families affected by Marfan syndrome and related disorders.
The Foundation accomplishes these goals through:
Research-Promoting research to improve diagnosis and treatment and to find a cure through:
- A grant and fellowship program for all Marfan-related disciplines
- Advocacy for federal funding and policies that support the NMF mission
- Medical and Scientific Symposia
- Partnerships with government agencies and other voluntary health organizations
Education-Providing accurate and up-to-date information about Marfan syndrome and related disorders to:
- Patients and families
- Health care professionals
- The general public
Support Services-Helping individuals and families with Marfan syndrome and related disorders through:
- The NMF Information and Resource Center, which provides access to personalized service through a toll-free information line, 1-800-8-MARFAN, and email
- The National Volunteer Network, consisting of Chapters, Network Groups, Support Groups, and individual volunteers, which carries out the NMF mission at the local level
- The NMF Annual Conference
- The NMF newsletter, Connective Issues
- Our website
Description
Marfan syndrome is a genetic condition that affects the connective tissue, including the heart, blood vessels, eyes, bones, joints and lungs. People with Marfan syndrome have a number of outward physical features, but it is the affect on the aorta,the blood vessel that leads away from te eart that can become life threatening .
It is estimated that at least 1 in 5,000 people in the United States have the disorder and about half of those remain undiagnosed
The chapter provides many opportunities for raising awareness of Marfan syndrome, which is so very important, as children who have Marfan should never participate in contact sports and without early diagnosis, some of these children do end up on the coroners table with a ruptured aorta. The eyes are also extremely susceptible in that a blow to the head can cause a lens to totally detach and bump the retina and cause a retinal detachment with possible blindness. What I have just written is pretty simplistic but it gives the consequences of what can happen.
Our chapter also provdes scholarships to any family in Iowa to allow them to attend the national conference when it is in a neighboring state. At this conference they can see the world renowned specialists for Mafan syndrome and related disorders at no charge, as well as attend the main conference. At this conference, one of the very main benefits at that these kids can walk in a room and feel "normal" and not be self conscious because they are in a room of peers who look like them and have the same issues they have.
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