WESTFIELD-Two local families are encouraging area residents to consider walking alongside them – for three miles – to raise awareness of scleroderma.
The ninth annual Westfield Stepping Out to Cure Scleroderma Walk is slated Sept. 16, rain or shine, at Stanley Park. Registration at the pavilion begins at 8:30 a.m., with the 5K walk stepping off at 10. There is a registration fee of $10 for participants.
Shannon Broderick, who initiated the Westfield Stepping Out to Cure Scleroderma Walk, is seen with her aunt, Nina Santucci-Pozgar, who has the disease. (Submitted photo)
Scleroderma is a chronic, often progressive, autoimmune disease in which the body’s immune system attacks its own tissues. The disease, which means “hard skin,” can cause thickening and tightening of skin, as well as serious damage to internal organs.
The local walk was initiated by Shannon Broderick nine years ago, when she was a senior at Westfield High School.
“For me it was about bringing attention to a disease that many people may have never even heard of,” said Broderick, noting her beloved aunt, Nina Santucci-Pozgar, had been diagnosed with the disease and she wanted to help raise funds to find the cause and cure.
“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 noted that the walk was one way to show her aunt she wasn’t alone in her struggles with the disease.
“There are others out there going through what she is going through and one positive outcome is that we can offer support to all of them – together,” said Broderick.
“Team Nina” is seen at last year’s Westfield Stepping Out to Cure Scleroderma Walk. (Submitted photo)
For Santucci-Pozgar, who contracted systemic scleroderma “suddenly” in 1999 but was not diagnosed until 2001, the outpouring of love from her family and friends who walk each year is indescribable.
“I have come to the realization fortunately relatively early in this disease onset that I do not want this disease to become me,” said Santucci-Pozgar, adding that “unfortunately the most damage is done” during the first three years of the illness. “I want to control it as much as I can. That mindset has seemed to work for me.”
Over the years, Santucci-Pozgar noted that in addition to her husband George, and daughter, Linda, her sister Gina Broderick and her children, Shannon and Michael, were her “core support group.”
“When I had my 12 surgeries over the years, Gina was always there for me, to listen to me and comfort me,” said Santucci-Pozgar. “She flew down whenever she could to try to help out. Shannon and Michael are reflections of her in that they constantly text me or call me on an almost daily basis to see how I am doing or to make me laugh.”
Santucci-Pozgar added that the “three of them have always given me a reason to go on when I sometimes have not felt like it.”
For another local family – Kara and Bruce Stackpole – their world was turned upside down when they learned their daughter Samantha, then age 8 in 2012, was diagnosed with diffuse systemic scleroderma.
Bruce and Kara Stackpole support their daughter Samantha in her fight against scleroderma. (Submitted photo)
“The year after Sami was diagnosed we found out from a friend that there was a walk right here in town for scleroderma,” said Kara Stackpole. “It was one of the best things that happened to us. Sami met other people fighting the disease and the Scleroderma Foundation New England became like part of the family.”
Stackpole added that the following year her family became more involved in the set-up and preparation work for the walk and “Team Sami” was born.
Stackpole noted that as a nurse and medic in the United States Air Force, her medical background has been essential to the family’s survival as they navigate the disease process.
“Samantha is followed by rheumatology, pulmonology, endocrinology, cardiology and GI,” said Stackpole. “Someone has to be the quarterback for all of it. I feel blessed to be knowledgeable when it comes to her treatment and disease.”
Members of “Team Sami” at last year’s Westfield Stepping Out to Cure Scleroderma Walk. (Submitted photo)
For Shannon Broderick, her goal is to raise $7,000 for this year’s walk.
“Every year that we bring in walkers and raise money, I feel that we are one step closer to bringing this disease further and further to light,” said Broderick. “The love and support that we receive each year is truly heartwarming. That is why we have carried it on year after year. It’s a truly amazing day for all involved.”
Registration information, personalized web-based pledge pages and other details can be obtained at the walk’s website – www.scleroderma.org/steppingoutwestfield or by calling Scleroderma Foundation New England (SFNE) at (978) 887-0658. Walkers can also collect donations and then register in person on the day of the walk.
Reata Pharmaceuticals is a gold sponsor of the event and will be on hand to provide bottles of water and information.
The walk is followed by refreshments, corn hole games, and a “lively” raffle.
“The three-mile walk through the area of Stanley Park is beautiful and there are excellent raffle prizes donated by the members of the community,” said Stackpole. “All in all it is a great day with excellent people. It is definitely a worthwhile cause.”
Proceeds from the Westfield walk will support SFNE in fulfilling its mission of providing educational and emotional support to people with scleroderma and their families, funding research to find a cure, and enhancing public awareness about the disease.
“Scleroderma occurs three to four times more often in women than in men, and it also affects children,” said Rebecca Dube, spokesperson for SFNE. “Its cause is not known and, presently, there is no cure.”
For Santucci-Pozgar, the initiative started nine years ago by her niece was life changing.
“I was so emotional at first because I couldn’t believe that someone had done something like that for me,” said Santucci-Pozgar. “Shannon was truly my guardian angel and has continued in that role. You cannot function with this illness without amazing people surrounding you and I am so blessed to have them in my life.”
