Family event raises funds for serious but little-known disease


June 24, 2012
The Detroit Zoo,
Cost: $24

Imagine your muscles hardening to the point that you can’t move your arms or legs, or, worse yet, your esophagus hardening to the point that you can’t eat anymore. That’s what happens to more than 300,000 Americans who have scleroderma, an autoimmune disease that’s not well-known, but affects many with very serious symptoms, which can ultimately lead to death.

“More people have scleroderma than cystic fibrosis,” said Hillary Smith, whose mother lived with the disease for some 30 years and recently died from it. “It’s just not publicized.”

The disease affects the connective tissue, and symptoms include sensitivity to cold in fingers and hands, thickening of the skin, shortness of breath, difficulty swallowing, joint stiffness and problems with internal organs. Misdiagnosis, or a delay in diagnosis, is common. Life expectancy for the disease is 7 to 10 years, and treatment can be expensive.

Smith is raising money for scleroderma research – there’s no cure yet – and awareness through Stepping Out Across Michigan to Cure Scleroderma Family Adventure Day, which is June 24 at the Detroit Zoo and includes a 5 kilometer run, a 2 mile walk and myriad activities for the entire family.

The event, now in its 33rd year and put on by the Scleroderma Foundation’s Michigan chapter, is poised to raise $85,000 this year through participants’ entrance fees and individual fundraising. Anywhere between 700 and 1,200 people participate annually, said Laura Dyas, executive director of the Scleroderma Foundation’s Michigan chapter.

“It’s such a fun day,” Dyas said of the annual event. “We find that families that have not been touched (by scleroderma) come out.”

For a $24 registration fee (increased to $30 on June 23, with registration available the day of the event), participants get admission to the Detroit Zoo – they can stay and enjoy the zoo after the event – as well as participation in the run or walk, and plenty of family-friendly fun.

There’s food, entertainment from Soft Rock 105.1, an appearance by National Football League hall of fame member Barry Sanders – whose sister had scleroderma – and an appearance by Mark Teich from Disney’s A.N.T. Farm and I’m In the Band, and the movie Leatherheads. There’s also a raffle and a kid’s corner with children’s activities like crafts. Children under the age of 5 can participate in the event for free.

The 5K chip-timed run begins at 8 a.m.and takes participants through Huntington Woods neighborhoods near the zoo. All runners receive a medal, and there are additional prizes for the first-finishing male and female, and the first-finishing male and female master’s runners.

This year, there’s even an award for the best zoo attire worn during the run, Dyas said.

The 2 mile walk is on the zoo grounds and begins at 8:15 a.m.

“It’s a fun day, even for our patients,” said Dyas, who explained that scooters and wheelchairs are on hand for them to participate however they would like. “They can come out and be part of the activities. There’s something for everybody.”

Register for the June 24 Stepping Out Across Michigan event at https://rftiming.webconnex.com/s5k. Find out more about scleroderma and the Scleroderma Foundation at www.scleroderma.org/chapter/michigan.