How One New Jersey Town is Bringing in the Big Guns to Beat Dystonia

Right now, you and I are smack dab in the middle of one of history’s greatest information ages.

We have more ways to learn about the world around us than ever before, and more ways to connect, too. Which is terrific if you’re trying to learn more about a rare disease like dystonia, or if you’re trying to get the word out about a aseent awareness events or fundraisers.

But information can be a double-edged sword: The more of it that’s out there, the harder it is to get your message heard.

The organizers of Jake’s Ride, an annual fundraising bike ride and walk held in Millburn, New Jersey, have found a unique way to raise their profile as reported by channel 12 in Cincinnati.  Jake’s Ride is affiliated with The Bachmann-Strauss Dystonia & Parkinson Foundation.

In early 2015, the Bachmann-Strauss Foundation entered into a new research partnership with The Michael J. Fox Foundation for Parkinson’s Research. At first glance that might seem like an odd pairing—but Parkinson’s and dystonia are actually closely related neurological diseases.

Team Fox, which is the community fundraising arm of the Fox Foundation, donates all the proceeds from its members’ fundraising campaigns to research. The Jake’s Ride team decided the best way to raise their event’s profile was to place it under Team Fox. That meant pushing the ride back slightly from the fall (when it’s traditionally held) to the spring. The event is already a successful family-friendly local tradition, and  the news station states that organizers think the move will pay off by giving them more time to build excitement and participation.

Jake’s Ride was originally set up to honor Millburn resident Jake Silverman, who was diagnosed with dystonia when he was 11 years old.

Today, with the help of dystonia treatment, Silverman is 19 years old and a student at American University!

Though Silverman still lives with the symptoms of his dystonia, he remains active in the national dystonia community and speaks abou more to help them raise awareness and funds for research, treatment, and, eventually, a cure.

To read the full story, check out the coverage by local channel 12 station in Cincinnati.

Help continue this amazing ride in Jake’s honor by sharing this story to your social networks!

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