Raising awareness about Scleroderma

Kara Sumner returned to Baldwinsville four years ago.

As it turns out, she was just in time to get involved with a local committee aiming to raise awareness about Scleroderma, a chronic, degenerative autoimmune disease. As the Syracuse Walk committee chairperson, Sumner is now preparing for the fourth annual Scleroderma Walk being held this Sunday at Onondaga Lake Park.

"A small group of us volunteer to put on this walk every year," Sumner said. "We raised nearly $19,000 in 2007 with over 150 walkers. We hope to increase this to 200 walkers and raise over $25,000 in 2008."

The Baldwinsville Messenger recently interviewed Sumner about her personal involvement and details about the event.

Why are you involved with the annual Scleroderma Walk?

My mom was diagnosed with Scleroderma about 15 years ago. While I was living in Buffalo, we became involved with the walk there. As it turned out, when I moved back to Baldwinsville four years ago, the walk committee for the Syracuse area was just starting to plan it's first walk. My mom was already involved, so I joined her on the committee.

Who spearheaded this annual event?

Four years ago, the Tri-State chapter of the Scleroderma Foundation decided to try a walk in the Syracuse area. Previously, there had been walks in Rochester, Binghamton and Buffalo, but they wanted to branch out and get more cities involved. We have a small walk committee made up of people who have in some way been affected by this disease.

Why should others get involved?

One of our goals is to raise awareness of this terrible disease. Most people have never heard of it even though the number of people affected is comparable to the number of people with multiple sclerosis.

What is Scleroderma?

Scleroderma is a chronic, degenerative autoimmune disease. It is characterized by a hardening of the body's connective tissue and is a painful, life altering disease that is fatal in its most severe form. Scleroderma can cause the body's immune system to attack it's own tissue. There is no known cause or cure. Scleroderma is a disease that predominantly affects women in the prime of their lives, but impacts children and men as well. About 80 percent of Scleroderma patients are women, typically diagnosed between the ages of 25 and 55.

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