Community members take the lead in the fight against scleroderma

A little more than three years ago, Cherry Hill resident Bill Cowan was taking part in a friendly trivia contest with his co-workers at Merrill Lynch in Mt. Laurel. The contest was a fundraiser, where the winning team would receive $3,500 to donate toward a nonprofit.

“Our team won the trivia contest all because one of the partners knew a lot about music,” Cowan said.

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After winning, Cowan convinced his team to donate the money to the Delaware Valley Chapter of the Scleroderma Foundation. Cowan had participated in events with his brother Bruce in North Jersey after Bruce’s wife died from scleroderma in 2000.

The group used the money to become a sponsor at the foundation’s Philadelphia walk. Cowan attended the walk and has been an active member of the foundation ever since.

The Delaware Valley Chapter of the Scleroderma Foundation is preparing to kick off its 2015 walk schedule. The first walk the chapter hosts will be in Ventnor City on May 2. There will also be walks at Allaire State Park in Howell on June 6, York Pa. on Aug. 8 and Philadelphia on Oct. 4.

Cowan has known about scleroderma for many years and supported the cause. However, he didn’t become an active volunteer until the 2011 walk. The chapter’s headquarters are located on Kings Highway in Cherry Hill, very close to Cowan’s home.

“For many years, I knew of the Scleroderma Foundation and knew of the disease,” he said. “I realized I could do more, right here in my own backyard.”

Scleroderma is an autoimmune disease where a person’s organs become hardened. While the disease is known to harden a person’s skin visibly, it can also affect a person’s internal organs, such as the heart or lungs.

The biggest challenge for the foundation community has been raising awareness in the medical community. Cowan said many doctors struggle to recognize scleroderma immediately.

“Largely, the medical community doesn’t recognize it at first,” he said. “The typical story from almost every case is the family or patient struggled for four or five years before the disease is identified.”

The Delaware Valley Chapter of the Scleroderma Foundation was founded in 1988 and serves eastern Pennsylvania, southern and central New Jersey and Delaware. Though the organization covers a large area, its community is dedicated and tight-knit.

Diane Lucente became involved with the foundation earlier this year. Her daughter Lauren is a Cherry Hill resident who was diagnosed with scleroderma in January at the age of 27.

“Shortly after her diagnosis, I spent hours and days and weeks researching,” Lucente said. “She got herself hooked into a couple of online support groups and began seeing a lot of postings for events.”

Lucente had a friend who died from scleroderma a number of years ago, but never really learned a lot about the disease until this year. She attended a couple of educational events with Lauren and is now becoming actively involved with the organization.

“It’s sort of like a group of people united in a war,” she said. “This is a war against a disease that there’s still not a whole lot known about.”

Formerly an attorney, Lucente is now retired and is dedicating much of her free time to the foundation.

“This is where my passion now lies,” she said.

The foundation is looking to get as many volunteers involved as possible, even those whom the disease has not directly impacted.

Fee Sepahi, executive director for the Delaware Valley Chapter of the Scleroderma Foundation, said the organization is trying to reach out to all areas of the community to find more volunteers. To help reach out to the public, the organization hosts events across its region, including walks, runs and other fundraising endeavors.

“We added a 5K run in Hershey last year called Race for Linda,” Sepahi said. “I would love to put on more events if we grow the volunteer base.”

Cowan said the organization is looking to get more general public members involved on the board.

“We want people who are looking to join a board and join a nonprofit because of their experience,” Cowan said. “It would be one of the things we’re really trying to do to make our group more effective.”

The public is encouraged to get involved with the Scleroderma Foundation, whether it be through financial contributions or volunteering.

“If you have hands and motivation to help us out, we could always use you at the walks,” Sepahi said. “Whatever is we need, we can certainly use (volunteer) services.”

Cowan invites members of the public to attend one of the foundation’s walks, even if the disease does not directly impact them.

“When you go to the walks, they’re fundraisers, but they are also spirited events,” he said. “You meet people and you get to build rapport and bonds with the families.”

For more information on the Delaware Valley Chapter of the Scleroderma Foundation, or to donate, visit

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