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In planning a fundraiser to increase awareness about dystonia, Debbi Mack of Columbia wanted something a little different. Concerts and dinners were too typical, she said, and a golf tournament was already in the works for October.
Instead, she's inviting area residents to hit the open road to help find a cure for a little-known disorder that causes constant contractions or muscle spasms. The first Freedom Ride for Dystonia is scheduled for Saturday at Old Glory Harley-Davidson in South Laurel. The event is a 67-mile "poker run," a common fundraiser for motorcyclists, Mack said.
As part of the event, area motorcyclists will start out at the dealership and drive to various stops along a route. At each stop, the cyclists will draw a card. At the end of the run, the riders will turn in their cards, and a judge will determine who has the best poker hand.
The grand prize for the event is $250. The day will also include music, raffles and vendors, as well as food donated by local restaurants. Ride registration is $30, and event admission without the ride is $20. All proceeds benefit the Dystonia Medical Research Foundation.
Dystonia can affect any part of the body — neck, torso, even the tongue or eyelids. NPR radio host Diane Rehm has a form of the disorder, spasmodic dysphonia, in her vocal cords, Mack said. Pianist Leon Fleisher struggled with dystonia in his right hand. The disorder can be caused by genetics, an injury or other factors. Regular botox treatments provide some relief, Mack said.
Mack, a freelance writer, received her diagnosis following a stroke in November 2004. She says she lives with constant pain, because her left hand moves all the time.
"I describe the pain as relentless," she said. "My hand is in motion all the time, even in directions it's not supposed to go in."
Surprisingly, people typically don't notice her condition when she's out in public, because she uses her right hand to hold her left.
On Wednesday, Mack will team up with the research foundation to speak to members of Congress about the disorder. The foundation has brought together several organizations for a Dystonia Advocacy Coalition event that aims to inform legislators.
Sally Presti of Upper Marlboro, who's working with Mack to plan the fundraiser, heads the Dystonia Support Group of Greater Washington. The group meets quarterly at Holy Cross Hospital in Silver Spring.
"Through the group we reach out to people with dystonia and their families," said Presti, who developed the disorder in October 1990 after a head injury. "We focus on public awareness, research and fundraising, because we're desperately trying to find a treatment and a cure."
Debbi Mack
How she is making a difference: Mack is organizing a Freedom Ride for Dystonia fundraiser that will take place in South Laurel. Call 301-725-1335 or go to www.freedomride4dystonia.wordpress.com. Visit the Greater Washington Dystonia Support Group at www.dystoniadc.com.
