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Pogopalooza Athlete Set to Break World Record and Raise Awareness for Rare Disease
Date:7/25/2013

heard of it. But I realized this was no ordinary illness.”

Scleroderma is a Greek word that translates to “hard skin,” but the disease is much more than that, often affecting internal organs with life-threatening consequences. Four out of five patients are female, most with onset between the ages of 20 and 50. However, the disease also affects men and children across all ages and ethnic boundaries.

Scleroderma is characterized by scarring caused by excessive fibrosis in the body’s connective tissue, leading to sometimes crippling vascular damage. Depending on the subtype of illness, scleroderma can cause severe damage to the lungs or kidneys. In most patients, the gastrointestinal tract is affected and it can impact the ability to consume solid food. Peripheral vascular damage due to scleroderma is nearly universal and can result in loss of fingers, toes and, sometimes, entire limbs. Like many other autoimmune diseases, scleroderma is chronic, not contagious or directly hereditary and dominating fatigue is common. There is currently no cure; scientists are working to find out how the disease begins, how it progresses and what can be done to slow, stop or reverse the crippling disease.

“I’ve seen the suffering caused by scleroderma and it, like so many other diseases, needs more attention,” he says. “I’m excited to introduce people to scleroderma and the work of the SRF (Scleroderma Research Foundation).”

Roumeliotis recently joined Cure Crew, a volunteer fundraising program offered by the SRF that provides families and individuals with the tools to turn passions and unique talents into fundraising and awareness success to help scleroderma patients.

The SRF was founded in 1987 by patient Sharon Monsky who lost her battle to the disease in 2002. It has since become America’s leading nonprofit investor in scleroderma research, raising more than $32 million to
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