Race 4 Grace raises money for rare disease

West Bend — When people see Nic Nelson’s “Race 4 Grace” shirt, the natural question is ‘Who is Grace?’

Grace is Nelson’s five-year-old daughter. Four years ago, she was diagnosed with spinal muscular atrophy (SMA).

Today, the kindergartner is bound to a wheelchair.

The rare genetic disease causes progressive muscle degeneration and weakness, and can eventually lead to death. There is no known cure.

Nelson and his wife, of Sioux City, first suspected something was wrong when at 18-months-old, Grace wasn’t trying to walk. They took her to the hospital and she was diagnosed with Stage 2 SMA.

Later that year, friends and family formed the first Race 4 Grace RAGBRAI team. Donations collected during the ride went to the Nelson family to help offset Grace’s medical bills. 

The  fundraiser was such a success, the group decided to make it an annual event to educate people about the disease and raise money to Families of Spinal Muscular Atrophy, an international support group and research center for this disease. The group gives out t-shirts to those who donate $25 or more. 

“We thought it was a really important cause,” Nelson said. 

This year marks the fourth year the team has ridden. When they stopped in this town, they had already raised roughly $6,000. They will continue riding through to Clear Lake. 

“We’re getting a lot of support,” said Scott Jensen, Grace’s uncle. “People just see the shirts and ask.”

For more information about Grace and find out how you can help with the race for a cure for SMA visit www.race4grace.org or e-mail beth@race4grace.org.

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