Walk with Tori raises funds to help fight rare disease
When Stephanie Pine of Clear Spring was expecting her daughter, Jordan, in 2001, the pregnancy was fine.
The then 30-year-old Pine said after giving birth she was feeling great, but for two or three months after having her baby, she still had swelling in in her hands and feet. Later, the swelling went away in her feet, but remained in her hands.
"I also was really depressed because I found out I couldn't breastfeed because I wasn't producing enough milk," she said.
Pine, who is now 46, said her doctor ran blood tests. That's when Pine was told she had scleroderma, which is a chronic connective tissue disease generally classified as one of the automotive rheumatic diseases, according to Scleroderma Foundation.
"I had no idea what it was," she said of the disease.
At first, she said, it was overwhelming but said "it was godsend my family was there." She's been married to her husband, Jeff, for 16 years but they've been sweethearts since they were young.
Since the beginning, Pine has participated in Walk with Tori, a fundraising effort named after Tori Anderson of Hancock who was the former lead singer of Possum Holler and radio personality for WAYZ FM. Anderson has scleroderma and raises funds for Scleroderma Research Center at University of Pittsburgh.
This year's event will begin at 1 p.m. with the short walk at 2 p.m. at Doub's Woods Park, off Maryland Avenue in Hagerstown. The event will wrap up around 4:30 p.m.
For Pine, it wasn't a question on why she needed to participate.
"We need a cure, and research is the only way to get the word out," she said.
Pine said she has a different versions of scleroderma from Anderson. However, Pine said it has has taken its toll on her physically. She has had to have several blood transfusions. She has what is called a "watermelon stomach," which when the lining of the stomach bleeds that looks like the stripes of a watermelon when viewed by endoscopy. That condition leaves her severely anemic. Her hands have now curled due to the disease. She has ulcers on tips of her fingers. She's also had kidney failure.
"I've been close to dying twice," she said.
Pine said she first met Anderson after reading a story in The Herald-Mail and reached out to her to offer her support. That's when she told Anderson that she too has scleroderma. That's also when Pine got involved with the walk.
She said she has been participating every year in the walk to help find a cure and also educate others about the disease.
"We need more people in the hospitals to know what it is," she said.
For Pine, it's about the camaraderie of the event for people who either have scleroderma or have a loved one who has been touched by the disease.
Debbie Flowers, 63, of Hancock is one of those who has a loved one with scleroderma. She has known Anderson for 15 years, and said they've been best friends for eight years, and has been a member of the planning committee for the walk.
That's why Flowers is so adament about raising funds to help find a cure.
"Research needs to be done," she said. "We do (the walk) to raise awareness."
Flowers said last year's walk drew about 250 people. And over the course of the last six years, the walk has been able to raise $180,000 to be sent to the University of Pittsburgh to continue its research for scleroderma.
This year's event will feature live music, baked goods and vendors. Silent auction items were donated by local community members and businesses. Although the walk itself is free, those who register ahead of time with a donation of $20 get their names put into a drawing for an iPad. There also will be walk T-shirts for sale for $15. Flowers said all the proceeds will go to the University of Pittsburgh.
What Flowers loves the most about the event is that "people come for a short time for one cause."
That cause has reached farther than Washington County. Recently, Flowers and Anderson went to see Keith Urban in Allentown, Pa. They met with Urban who has met Anderson over the years through her job with the radio station. In tribute to her, Flowers said he wore a green scleroderma awareness bracelet during the concert.
And staff members of Scleroderma Research Center at University of Pittsburgh will return to walk as a team for the event.
"I hope that the people who come to walk who have scleroderma leave with hope," Flowers said. "It's important to have hope."
And for Pine, it's just that same message as she sees how research is helping slowly inch toward a cure.
"All the people who show, shows that people do care," she said. "It gives us hope that one day there's going to be a cure."