Event to fight scleroderma
Published 9:32 pm Wednesday, June 4, 2014
A Driver woman hopes an event she’s organizing for Bennett’s Creek Park on June 29 will raise awareness and money against a medical condition not many people have heard of.
Joan Blanchard, diagnosed with scleroderma, a rare autoimmune rheumatic disease, is the founder of Scleroderma Suffolk, the group hosting the first Win the Fight Walk and Car Show.
“My four brothers are all involved in old cars and hotrods,” Blanchard said of staging a car show. “It seemed like a natural match.”
She decided to add a walk component, she said, to attract more participants after accumulating a lot of prizes for the event’s raffles and silent auction via previous fundraising efforts, including a “Spirit Night” at Chick-fil-A in North Suffolk in March.
“We’ve got a lot of really good items,” she said, “and I needed to expand the number of people.”
The car show and walk is planned for 1 to 5 p.m., and will also include vendors, Blanchard said.
But she is hoping to register more vendors and walkers leading up to the event.
Registrations — for the car show as well — will be accepted right up until the day of the event, she said.
Car-show registration costs $20 per car, or $25 on the day of the event, and participants receive a free T-shirt. A limited number of T-shirts remain available, Blanchard said, and additional shirts are available for purchase.
Registration for the walk, meanwhile, costs $10, which also includes a T-shirt.
Proceeds from the event will benefit the Johns Hopkins Scleroderma Center in Baltimore, Md., Blanchard says, where she has received “outstanding” support and resources.
Since her diagnosis in 2005, which followed a sudden onset involving months of debilitating pain, swelling and deep fatigue, along with other “queer physical abnormalities,” Blanchard had to stop her photography business, Barefoot Studios.
She has since devoted her time to Scleroderma Suffolk, but she hopes to find some interested individuals to form a board or committee to help share the burden of running it.
She also said she wants to raise enough money to set up the organization as a 501(c)3 charity.
“Fatigue is a big issue,” she said. “It’s hard to make sure your energy level” remains high enough.
“Tackling this event has been quite a job. There is a fair share of stress and hard work, and that’s not always a healthy thing for a scleroderma sufferer.”
To register as a walker or vendor, or to show a car, email sclerosuffolk@charter.net or call 638-0624.
More information can be found at www.sclerodermasuffolk.com.