Grassroots Volunteers Bring Awareness to Debilitating Neurological Disorder

WARREN, Mich. - Oct. 25, 2021 - PRLog -- 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. Delise became passionate about increasing dystonia awareness after meeting Dunn, a childhood friend of his children. Dunn has lived with dystonia since age five. Dystonia is a chronic, disabling disorder marked by extreme muscle contractions that cause involuntary body movements and postures. Delise and Dunn 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 Delise. "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 Dunn. "It's humbling to see how many people care about my story."

https://youtu.be/kMV98fdlmF8

Dunn 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. Dunn and Delise 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.

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 (DMRF) is the leading dystonia patient advocacy organization. The DMRF can be reached at 800-377-3978, dystonia@dystonia-foundation.org, or https://dystonia-foundation.org

More information about $5DollarCure4Dystonia is available at: https://5dollarcure.com/

Contact
Jessica Feeley
***@dystonia-foundation.org
Photos: (Click photo to enlarge)



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