CARMEL, Ind. — A family is inspiring Indiana with their dedication to fighting a rare disease.
Saturday evening, the Vollmer family is hosting a walk at Coxhall Gardens in Carmel.
They are raising money to find a cure for spinal muscular atrophy, a genetic disease that affects the nerves in your spine used for walking, eating and even breathing.
Finding a cure is important for Adrienne Vollmer, whose son, Graham, was born with SMA.
"When Graham was born there were no treatment drugs yet FDA approved and so without treatment, with type 1 SMA like Graham has, his life expectancy was 2 years old," she said. "So when he was able to start into a clinical trial and start treatment, the fact that he's able to be here with us today is really all because of advances in medicine."
There are three FDA-approved treatments for SMA now, but no cures. About 135,000 Hoosiers are carriers for the gene and the Vollmers hope the money they raise Saturday will fund research to end SMA for good.