Reason to Rock in Geneva raises awareness, funds for scleroderma

Stephanie Somers Gresh, whose mother died of scleroderma several years ago, is devoted to fighting the rare autoimmune disease that doesn't have a cure.

As the executive director of the Scleroderma Foundation of Greater Chicago, she has organized walks and fundraisers throughout the suburbs, trying to carry on the organization's mission of supporting those who have the disease; educating people about the resources offered; and raising funds for scleroderma research.

The goal of the third annual Reason to Rock fun walk and festival Sunday afternoon was no different, Somers Gresh said. Hundreds of people, many of whom are affected by scleroderma, gathered at the Fifth Third Bank Ballpark in Geneva for a milelong walk around the baseball field, while Ozzie, the Kane County Cougars' mascot, cheered them on.

The event also included activities for children, food and beverage vendors, a classic car show and live music from the band Slingblade.

"Doing events like these, in addition to raising money for research, raises awareness and gets people in the community to come out and know a little bit more about the cause," Somers Gresh said.

Scleroderma, which means "hard skin," is a chronic, often progressive disease in which the immune system attacks its own body. It can cause thickening and tightening of the skin, and in some cases, serious damage to internal organs including the heart, lungs, kidneys, esophagus and gastrointestinal tract.

The Reason to Rock fest is organized by members of a scleroderma support group in Naperville, said event co-chair Liz Suriano, a Lombard resident who has scleroderma. The event raised $24,000 the first year and $18,000 the second.

This year's event is the best so far, said Westmont resident Nancy Baldwin, who has had scleroderma for 12 years. Baldwin, who was one of the first scleroderma patients to receive a stem cell transplant, brought more than 20 family members to participate Sunday.

"The purpose is to really benefit patients and their families," she said. "It's educating the families and other people about what scleroderma is and developing research for finding cures."

Suriano said she is grateful to live near Chicago, where some hospitals have scleroderma programs. The money raised for the disease, she added, often goes directly to the doctors who treat and help her and other patients in the area.

Still, she said, funding for such programs can be scarce because the disease isn't well known.

"Raising money to help this very rare disease that gets lost on so many people," Suriano said, "it really means a lot."