WESTFIELD- The Scleroderma Foundation is hosting the 10th annual Stepping Out to Cure Scleroderma Walk on Sunday, Sept. 15 at 10 a.m. at Stanley Park to raise funds to research a cure for Scleroderma.
The three-mile (five kilometer) walk steps off from Pavilion B at Stanley Park. Registration for the walk begins at 8:30 a.m. and participants are expected to pay a $10 registration fee.
Scleroderma is an autoimmune disease that causes the body to attack its own skin tissue, and in some cases the connective tissues of the internal organs. The word Scleroderma is Latin for “hard skin.” The disease makes the skin turn hard, making use of one’s fingers or mouth more difficult.
The Stepping Out to Cure Scleroderma Walk was started 10 years ago by Shannon Broderick, who was a senior at Westfield High School at the time. Broderick’s Aunt, Nina Santucci-Pozgar, was diagnosed with scleroderma in 2001 after apparently contracting it in 1999. Broderick wanted to do whatever she could to help raise funds for a possible cure.
At the moment, no such cure exists, although treatment is available to mitigate some of the symptoms of the disease.
“For me it was about bringing attention to a disease that many people may have never even heard of,” said Broderick, before last year’s walk, “I grew up in a very loving family,” she said. “My aunt and I are extremely close. When you find out that a loved one of yours is suffering, you want to do everything possible to help.”
Broderick had heard that similar walks were taking place for a scleroderma cure around New England, so she chose to start one in Westfield.
One person involved in the walk is Westfield resident Bruce Stackpole. Stackpole’s daughter Samantha was diagnosed with scleroderma in 2014 at the age of nine.
Stackpole said that when she was diagnosed, they felt only shock and confusion.
“We didn’t know what the disease was either,” said Stackpole. “A lot of it was scary and confusing.”
He said that they originally took Samantha to the doctor when they noticed Raynaud’s disease in her hands. Raynaud’s is the constriction of blood vessels that make the affected area turn a white or blue color.
While Samantha receives treatment for scleroderma, it still acts as a burden on her day to day life. Stackpole said that she is typically very active, as she has always done dance and gymnastics. The scleroderma, however, limits her flexibility and movement.
Samantha takes part in the walk as well as being the captain of Team Sami. Anyone can either participate in the walk as an individua,l or join up as a team representing a loved one affected by the disease. Each team usually creates a fundraising page that can be active year-round. The funds raised go towards researching a cure for the disease. Much of that research takes place in Pittsburgh, where the Stackpole family travels once a year so Samantha can see scleroderma specialists.
As part of the walk there will be a raffle to help raise funds as well. Stackpole said that there would be around 25 gift baskets that will be raffled off. One gift basket contains a pass for four people to have a round of golf at the Granite Links Golf Club in Quincy, MA. Another basket gives the recipient a full Maine lobster dinner.
Stackpole noted that, for the last five years, Westfield’s scleroderma walk had the highest turnout in New England.