Effort aims to battle neurological condition $5 at a time

Local advocates launch 5dollarcure.com in partnership with Dystonia Medical Research Foundation

By: Brian Louwers | Warren Weekly | Published March 10, 2017


WARREN  — In the world of health care and medical research, finding effective treatments and cures is expensive. But local advocates long dedicated to raising awareness about dystonia are hoping to get the money needed to fight it, $5 at a time.

Mike Delise said he came up with the idea after 12 years of working alongside his friend, Warren resident Jason Dunn, who was diagnosed with the serious neurological condition at age 6.

“I was always thinking that there’s a lot of people who want to donate to a cause, but they can’t afford it. They can’t do $20 or $25, but they may have $5, and they may think that $5 won’t mean anything,” Delise said. “With this campaign, that means everything.”

Working with Dunn and the Dystonia Medical Research Foundation, Delise launched the $5 Cure for Dystonia campaign on Rare Disease Day, Feb. 28.

Delise said the years he’s spent working with Dunn have focused mostly on sharing his story with others to raise awareness about dystonia, a neurological condition that causes severe muscle spasms in the extremities, face and vocal cords.

“It’s always been about awareness. Now we want to focus on raising some money for a cure,” Delise said.

Jessica Feeley, the editor and special projects manager for the Dystonia Medical Research Foundation in Chicago, said funding research is of critical importance to improving the quality of life for those with dystonia.

“No. 1, there are treatments available for dystonia, but there’s no single treatment that benefits even a majority of dystonia patients,” Feeley said. “And there’s no cure.”

Feeley said there are several treatment options that are very individualized, and there’s no “cookie cutter” approach to managing the condition.

She said identifying new and improved treatment options is a big part of the Dystonia Medical Research Foundation’s mission, and a fundraising campaign like the $5 Cure for Dystonia will provide much-needed research dollars.

“We’ve had the pleasure of Mike’s support for a number of years now. He’s been very involved with our organization and has really been a champion of dystonia awareness, trying to get the word out, trying to let people know what it is,” Feeley said. “With this new campaign, he’s trying to raise money for research and sort of inspiring people that really, even a $5 donation can make a real difference, given the urgent need for research.”

Delise and Dunn are now promoting the campaign through social media and a website, www.5dollarcure.com.

“I’d like to add that $5 doesn’t seem like much, but you can’t put a price tag on the support from family and friends,” Dunn said in a Facebook message.

Delise said all of the donated funds will benefit the Dystonia Medical Research Foundation.

“We’re going all over social media, hoping to get people that will hear this and donate to it from all over the world,” Delise added. “We’re hoping this will really catch fire.”

Feeley said conservative estimates put the number of Americans affected by dystonia at no fewer than 250,000. She said dystonia is considered the third-most-common movement disorder, after Parkinson’s disease and essential tremor.

To donate or for more information, visit www.5dollarcure.com or www.dystonia-foundation.org.