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Scleroderma: Searching for the cure

Like many people, Nancy Sumner knew little about scleroderma when she was first diagnosed more than 15 years ago.

"I had never heard of this disease," the Baldwinsville resident said, adding that her doctor wasn't able to share much information about the condition with her either.

Sumner sought to learn more about scleroderma through all types of resources, eventually finding answers from others afflicted with the disease and through participation in scleroderma walks for the cure.

"I began to meet others with this disease and found out how devastating it can be," Sumner said.

Scleroderma, an incurable disease that causes the skin to harden, often affecting the internal organs, can have symptoms ranging from mild to life threatening. There are more than 10,000 victims in Upstate New York alone and more than 300,000 nationwide. With that many diagnoses, it's hard to believe more is not known about the disease. That is what Sumner hopes to change.

Eager to find a cure, Sumner was instrumental in bringing the Scleroderma Walk to Syracuse. Last year's event raised $17,000 with 135 walkers. This year's event, which will be held June 14 at Onondaga Lake Park, is sponsored by the Scleroderma Foundation Tri-State, which also holds walks throughout June (known as National Scleroderma Month) in Albany, Rochester, Buffalo, Binghamton and Long Island.

"I am involved in the organization because I have scleroderma and I want to help get the word out about this disease," Sumner said adding that the Scleroderma Foundation Tri-State is a non-profit organization dedicated to finding a cure for scleroderma through education and support. "Research is progressing, but with very limited government funding, we need help from the community to bring attention to our cause."

The fifth annual Syracuse Scleroderma Walk begins at 10 a.m. at the Willow Bay tent area in Onondaga Lake Park with registration beginning at 9 a.m. (online pre-registration is $15 at scleroderma.org/stepping out/tristate.htm, $20 registration at the walk). Each participant will receive a T-shirt and a tote bag and refreshments are available for walkers. Moe's Southwest Grille will provide food and Whirlin Disc DJ'S will provide musical entertainment. There will also be a Chinese auction with many great baskets donated by area businesses. The money raised from the walk is used to help raise awareness of the disease, help those afflicted through education and support and, most important, to find a cure.

"Since so many people have never heard of scleroderma, they are reluctant to help," Sumner said. "We really need to find a cure."

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