Massachusetts General Hospital

“Organizing this fundraiser is therapeutic for us. We’re doing something positive not only for our kids but for other families. We can’t control what happens to our children—but we can control this.” - Sheri Kulis       Get started!

Sheri and Dave Kulis have learned a lot about ataxia with oculomotor apraxia type 2 (AOA2) since their son, Brennon, age 20, and daughter, Allie, age 18, were diagnosed with this rare neurological disorder. A progressive disease with no cure and few treatment options, ataxia erodes coordination and balance.

The family decided to strike back and gathered friends, families and co-workers into a fundraising force. Raising $30,000 from 334 contributors, Sheri and her team ran in the 2011 Falmouth Road Race, held every August in their hometown. All proceeds went to the MINDlink Foundation, which supports the research of Jeremy Schmahmann, MD, at his Mass General Laboratory for Neuroanatomy and Cerebellar Neurobiology.

“When our kids were diagnosed,” says Dave, “We’d never heard of ataxia. Now, we know its meaning all too well. At first, we shared our news only with family and close friends. But when Allie was diagnosed this past winter, we couldn’t live any more in solitude. People had to know.”

The family discovered allies in the New England Support Group of the National Ataxia Foundation. And they found runners among family members, friends and co-workers. “Even people we never met wanted to run,” says Sheri. “And Mass General hooked us up with First Giving, which enables people to donate on line.”

The family held a house party after the race attended by entire team along with Dr. Schmahmann. “We’ve raised awareness as well as funds,” says Sheri. “And for our kids, it was huge to see such support. We’re already planning next year’s run.”