$5Cure4Dystonia Launches on Rare Disease Day to Raise Awareness

2/28/17

Mike Delise is on a mission to educate the world about dystonia, the rare brain disorder that affects more people than ALS, muscular dystrophy, and cystic fibrosis combined. Mike became passionate about promoting dystonia awareness after meeting Jason Dunn, a childhood friend of his children, who has lived with the disorder since about age five. Dystonia is a chronic, often disabling, disorder marked by extreme muscle contractions that cause twisting, repetitive body movements and abnormal postures. The $5DollarCure4Dystonia campaign will launch February 28, on Rare Disease Day, an international movement to bring visibility to organizations that represent little-known disorders like dystonia and the urgent need for rare disease research. Proceeds from $5DollarCure4Dystonia benefit the Dystonia Medical Research Foundation. Click here to donate.

“When I met Jay, I was so shocked that I had never heard of dystonia, this disorder that affects him so much,” says Mike. ”I decided I had to do something.”

Now in his 30s, Jason has undergone four brain surgeries and countless medications, injections, and medical consultations. While dystonia has taken his ability to speak and walk easily, he lives independently, travels, and is an active dystonia advocate, appearing on nationally broadcast television programs and in numerous media stories.

“Jay and I have focused on awareness for the past 12 years, and now we feel it's time to raise money to find a cure,” says Mike. “We feel that many people would like to donate to find a cure but maybe can only afford $5 and think that it won’t make a difference. So we came up with this campaign where your $5 means everything. We want to raise a million dollars $5 at a time. We feel like we can raise awareness and donations with the $5Cure4Dystonia.”

There are many subtypes 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 choking voice, hand cramps, or a twisted foot. Conservative estimates suggest no fewer than 250,000 Americans are affected. Dystonia is frequently misdiagnosed due to a lack of awareness even among medical 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 www.dystonia-foundation.org.

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Accelerating Research & Inspiring Hope

The Dystonia Medical Research Foundation (DMRF) has served the dystonia community since 1976. Join us in our global effort to find a cure.