Approximately 200,000 people in the U.S. have Marfan syndrome or a related disorder, but according to experts, half don't know they have it. Without a diagnosis, they are at risk of a sudden early death.
Port Washington, NY (PRWEB) October 25, 2012
The National Marfan Foundation's (NMF) Team Heart & Soul is running in the 37th Marine Corps Marathon through Washington, DC, and Arlington, VA, on October 28. This marks the first time that the NMF is a charity partner in a marathon.
“We are excited to be part of the Marine Corps Marathon, which is one of the most popular marathons in the U.S. We are so proud and appreciative of the runners who are participating in both the full marathon and the 10K to increase awareness of Marfan syndrome and related conditions and support our foundation,” said Cathie Tsuchiya, NMF Director of Annual Initiatives & Donor Relations.
Marfan syndrome is a potentially fatal disorder of the body’s connective tissue that primarily affects the heart and blood vessels, the bones, and the eyes. In people with Marfan syndrome, the aorta – the large blood vessel that carries blood away from the heart – is fragile and is can enlarge and tear. It can even rupture, which would cause sudden death. Approximately 200,000 people in the U.S. have Marfan syndrome or a related disorder, but according to experts, half don’t know they have it. Without a diagnosis and treatment, they are at risk of an early sudden death.
Team Heart & Soul is comprised of twenty-two runners from all over the country who are running in the full marathon as well as another five who are running in the event’s 10K. The runners are raising money for the Foundation’s education, patient support and research programs. Among them are:
- Jon and Beth Gould, of Fox Point, MI, who are running in honor of their 10-year-old daughter, Anna, who has Marfan syndrome.
- Amy and Scott Avitabile, of Bloomingdale, NJ, who are running in honor of Scott’s brother Keith, who has Marfan syndrome. Scott is member of the NMF’s Board of Directors.
- Bogie Moore, of Park Ridge, IL, who is running in memory of her husband, Harry, and son, Jimmy, who died as a result of Marfan syndrome complications.
- Mindy Izzo, of Joliet, IL, who is running in memory of her husband, Jeremy, who died as a result of Marfan syndrome.
- Elizabeth Weissman, of Washington, DC, who is running in honor of her brother, Ben, and mother, Roanne.
- A team of six runners from Jonnie’s Goodguys, which was founded in 2006 after the death of Jonathan Miller, 33, of Indianapolis. Jonathan died of an aortic dissection as a result of undiagnosed Marfan syndrome.
“We are so grateful to all the runners in Team Heart & Soul who are committed to fundraising for the Foundation and to heightening awareness of Marfan syndrome and related disorders,” said Tsuchiya. “When a loved one is coping with Marfan syndrome or has lost the battle with the condition, it is so hard to stand by and watch. The runners’ are showing that they can take action and make a difference on behalf of their family members and friends.”
National Marfan Foundation
The National Marfan Foundation is the only non-profit voluntary health organization in the U.S. dedicated to saving lives and improving the quality of life of individuals and families affected by Marfan syndrome and related disorders. It accomplishes these goals by:
- Educating affected individuals, family members and the health care community about Marfan syndrome and related disorders.
- Advocating for, and funding, clinical and molecular research into the early detection and treatment of Marfan syndrome.
- Providing a network of local and special-interest support groups to help affected people and their families share experiences.
For more information on Marfan syndrome and related disorders, contact the NMF at 800-8-MARFAN or visit the NMF’s web site at http://www.marfan.org.