Parkinson’s Disease Advocates want lawmakers to create patient registry for the state of Indiana

INDIANAPOLIS – The number of people living with Parkinson’s Disease is expected to increase to 1.2 million people nationwide by 2030. That’s according to the American Parkinson Disease Foundation.

On Tuesday at the statehouse advocates rallied to raise awareness about the disease.


A leader at the rally was Rock Steady Boxing. The organization specializes in helping people with Parkinson’s disease stay active and alleviate their symptoms.

Doreen Fatula was diagnosed with Parkinson’s about three years ago. Her first indicator was that she had tremors and her walk was slower. Once diagnosed she was a bit shocked. However, her doctor gave her a brochure which told her all about Rock Steady Boxing. She said within 48 hours she signed up for class. Those classes she says were life changing.

“Of all nine of my symptoms I only have one now,” Fatula said.

The founder of Rock Steady Boxing is Scott Newman. If that name sounds familiar it’s because he was the Marion County prosecutor about two decades ago and the public safety director under Indianapolis Mayor Greg Ballard. So, it’s safe to say he knows how to put up a fight, which is why he created Rock Steady Boxing.


“I needed to do something about it,” Newman said. “I knew people needed to care about it and that we could do something. So we put the gloves on and we went to work.”

That work is expansive. Newman says there are almost 900 of his chapters in the Unites states and 13 in foreign countries. Now, he’s hoping to take his work to the statehouse.

He hopes that Indiana lawmakers will authorize the creation of a registry for people who are currently living with the disease.

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“It will record everything we can find out about every person in the state that has this disease, it’s about 20 thousand a year they say,” Newman said.

Dr. Tara Kimbason is a movement disorder specialist, an expertise she says didn’t exist 20 years ago. She says a registry of people with Parkinson’s disease will benefit patients and their access to care.

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“Having that and patients participate we can keep track of symptoms and signs and also help develop research protocols,” Dr. Kimbason said. “That also helps partnerships among movement disorder specialists. “

Only a handful of states have well established Parkinson’s registries. Advocates are hopeful that next legislative session lawmakers will pass legislation to create one in Indiana. To learn more about Parkinson’s disease click here.

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