$5Cure4Dystonia Raises $100K+ for Medical Research

Mike Delise and Jason Dunn are on a mission to find a cure for dystonia $5 at a time. They are also educating the world about this under-recognized brain disorder that affects more people than ALS, muscular dystrophy, and cystic fibrosis combined. Mike became passionate about increasing dystonia awareness after meeting Jason, a childhood friend of his children. Jason has lived with dystonia since age five. Mike and Jason started $5Cure4Dystonia in 2017 to bring visibility to dystonia and the urgent need for improved treatments and a cure. To date, they have raised over $100,000 to benefit the Dystonia Medical Research Foundation.

“The only way to find a cure is through research—and research takes dollars,” said Mike. “We found that many people want donate but maybe can only afford $5 and think that won’t make a difference. But to $5Cure4Dystonia, your $5 means everything.”

“We’re grateful to everyone who helped make $5Cure4Dystonia such a success,” said Jason. “It’s humbling to see how many people care about my story.”

Jason has undergone four brain surgeries and countless medications, injections, and medical consultations. Dystonia has taken his ability to speak and walk easily. Nonetheless, he is a popular advocate in the dystonia community. He has been featured on National Geographic Extraordinary Humans, multiple metro Detroit news media, and gained a large social media following. Jason and Mike have advocated for dystonia on Capitol Hill in Washington, DC and at state and local levels. Michigan Congressman Andy Levin and Governor Gretchen Whitmer have each recognized September as Dystonia Awareness Month in his honor.

Dystonia is a chronic, disabling disorder marked by extreme muscle contractions that cause involuntary body movements and postures. There are multiple types of dystonia that impact people of all ages and backgrounds. Common signs include twisting or abnormal movements of the head and neck, excessive blinking, a breathy or strangled-sounding voice, hand cramps, or a twisted foot. Estimates suggest no fewer than 250,000 Americans are affected. Dystonia is frequently misdiagnosed due to a lack of awareness even among health professionals.

The Dystonia Medical Research Foundation is a 501(c)(3) non-profit organization dedicated to advancing research for improved dystonia treatments and ultimately a cure, promoting awareness, and supporting the well-being of affected individuals and families.