Website collects $5 donations to fight dystonia - the rare disorder that disrupts brain, body

Website of small donations can help big for those battling dystonia

It's a disorder that causes a disruption between the brain and the body, creating an unimaginable struggle with simple day-to-day activities.

FOX 2 - Dystonia is always a tough topic- and for that reason it doesn't get much attention.

We're talking about the movement disorder that causes a disruption between the brain and the body. Deena Centofanti hopes that one day she will be able to stand there and say thanks to so many of you donating $5, researchers are very close to a cure for dystonia. We can't say that yet, but until then, the fight continues.

Jay Dunn, 43, does not want help as he slowly slides out of the truck. He wants to show us that he can still walk, even as he battles his body with every step. It's not easy, but after being diagnosed with dystonia at the age of 6 years of age, nothing for Jay has been easy.

Deena: "Good to see you, good to be outside, right?"

See that smile? Jay says a lot with expressions but to really communicate, he taps out each word on a device. Dystonia causes muscle contractions and spasms that can affect the entire body.

After enduring several brain surgeries Deena asks him if he sees any progress.

"Not really so far the treatments have been disappointing," he said, typing his response through a device.

Jay Dunn and Deena Centofanti meet in Roseville, at the corner of Groesbeck and I-696 at Lazybones Smokehouse, in the shadows of a billboard featuring his picture. It is promoting a website, 5dollarcure.com.

The man behind the billboard is Mike Delise.

"We're great friends, he's like a son to me," Delise said.

Mike has been a friend and father figure to Jay for many years, knowing behind the disorder is a smart, funny, kind, and determined man.

"They call themselves warriors and on the battlefield, they don't leave their brothers behind," Mike said. "We have to keep this until we can find a cure."

In 2018, another warrior, Breanna Strange, was crowned homecoming queen at South Lyon High School. She was diagnosed with dystonia as a baby and is now 20, but as mom Kim explains, she's not discouraged.

Dystonia warrior Breanna Strange, right, and her mother Kim.

Deena: "How do you keep that bright attitude?"

"She said she is mostly happy because she knows she is here for a reason," said her mother. "Breanna's brain doesn't communicate with muscles. She can talk, she can think, she is smart, she just can't do anything for herself."

Right now doctors don't really know what causes dystonia, it's likely a miscommunication in the brain. The hope is research will bring answers.

She still has hope, Kim says, adding Breanna wants to walk.

Deena: "Do you still have hope?

"Yeah," Jay Dunn said, with a smile.

The billboard will come and go but you can always go to the website 5dollarcure.com. The money goes right to the dystonia medical research foundation.

Jay and Mike came up with the $5 ask to make it affordable to everyone.

TO DONATE: The website is https://5dollarcure.com/