The Observer, April 13, 2007
Volume XXXIX, Issue 24
March for Marfan draws participants from around the state
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Alpha Phi Omega (APO) is used to helping those in need, but last year, they were in the market for a new project. They wanted a larger service project, with the potential to involve the whole campus community.
"[We] decided to go with the National Marfan Foundation (NMF) as a charity since Marfan Syndrome isn't as widely known as some other medical problems, so we thought it needed the attention more," said Katie Schaub. "We also consider this an opportunity to raise awareness of Marfan Syndrome."
Another factor in the decision to choose the National Marfan Foundation was that APO has three brothers and alums who are suffering from Marfan Syndrome. There are also a few other students at Case with the disease. "Given that the prevalence is [one in 5000], that's pretty extraordinary," Katie said.
Symptoms of Marfan include being tall, thin, near-sighted, double jointed, or having an inwardly or outwardly curved breastbone. Marfan Syndrome is a dangerous genetic disorder that causes the connective tissue found throughout the body to become too flexible and grow too quickly. This can cause dislocation of the retinas, scoliosis, and aortic dissection. "Basically, the aorta in a person with Marfan can grow to be five or six times the normal size, which causes the walls of the aorta to weaken and tear," said APO member Maya Brown. "This can cause death."
With treatment, persons with Marfan can achieve a normal life expectancy. Untreated, the disease leads to a much shorter life span. There is currently no cure for Marfan, but the NMF is searching for a cure, and the March for Marfan supports this.
"The NMF provides support for people with Marfan and other connective tissue disorders and their families, lobbies for federal research dollars for medical research, and educates medical professionals about connective tissue disorders," said Brown.
Last year was the first year for the March for Marfan, and APO raised $1200 for the NMF. "We got local news coverage and national coverage through the NMF," Brown said. "Last year the event was also held in the memory of Steven Jerkins, a local man who passed away from an aortic dissection a couple of weeks before the March for Marfan."
The march will feature a blues band from Columbus, Aces High, free food, and a raffle. People are coming from all around Ohio, and there is even a participant from New York. So far, 70 people have registered.
"I think it would be awesome if we can get 100 people to come this year," said Brown. "My hope is that this event will raise awareness about Marfan, on campus, in Cleveland, and with the medical community. (We do have medical professionals from the Cleveland Clinic coming)."
Check-in for the race tomorrow starts at 10 a.m. in Nord Atrium and the race starts at 11 a.m. The walking portion will start at 11:15 a.m. It costs $20 to register, or $70 for a group of four.
Questions about NMF or the March for Marfan should be directed to Maya Brown at maya.brown@case.edu. Registration information is at http://apo.case.edu, and there is additional information on Marfan syndrome at www.marfan.org.
