Putting Parkinson’s on the Ropes

Jul 2, 2018 | Features, Philanthropy Journal, Recreation and Sports

Rock Steady Boxing takes the fight to Parkinson's Disease.

By David Mueller

With over one million people diagnosed in the United States alone and no cure in sight, Parkinson’s disease is truly a fearsome opponent. However, people living with the disease across the country and around the world are discovering an unusual and surprisingly effective means of fighting back: by pulling on a pair of boxing gloves and taking their best shot. Rock Steady Boxing, an Indianapolis-based nonprofit with a global network of affiliates, trains people with Parkinson’s disease to fight back through a non-contact, boxing based fitness curriculum.

Although boxing might seem like an unlikely fit for people living with a degenerative disease, the very skills and capacities that boxers train for- agility, endurance, speed, flexibility- are exactly what people with Parkinson’s need to slow the progression of the disease’s symptoms. Recent research (at the University of Indianapolis and The Cleveland Clinic) indicates that certain forms of intense exercise can be neuroprotective, slowing the progression of Parkinson’s symptoms. Boxing has proven to be an especially effective form of exercise in this regard, due to its mix of footwork, hand-eye coordination and strength training. Furthermore, boxers at Rock Steady gain the added benefit of working with a community of fellow patients, experiencing the same challenges and fighting the same battles.

“In our gym, the camaraderie is just as important as the exercise” says Joyce Johnson, Rock Steady’s Executive Director. “All the people in the gym have Parkinson’s and so they’re fighting the same opponent together. It’s just a wonderful family atmosphere.”

One Man’s Fight

Although a growing body of research now supports Rock Steady’s approach, it began on a lark, as one man’s struggle to stay fit and mobile. Scott Newman, a former Marion County, Indiana prosecutor, was diagnosed with early-onset Parkinson’s at age 40. A friend offered to train Newman to box as a way to exercise and push back against the disease. He soon experienced a dramatic improvement in his overall health and a reduction in his symptoms.

“After he had been boxing for two or three months, his tremors lessened” Johnson says. “He had lost his ability to type and he got that ability back and didn’t have to use voice activated software anymore.”

These improvements did not go unnoticed in the early-onset Parkinson’s support group that Newman attended. His peers saw his success and wanted to join the fight. Newman was able to network through his professional connections to acquire a gym for the group and eventually hired three-time world champion boxer Kristy Follmar to assist with training. In 2006, he founded Rock Steady Boxing as a registered nonprofit.

“Scott had no idea when he started boxing that this would become a world wide fight against Parkinson’s,” says Johnson. “He was just doing something with his buddy to keep from being depressed.”

Although word spread quickly and Rock Steady became something of a local sensation in Indianapolis, the initial flood of interest (and contributions) eventually slowed and the group found themselves low on funds and in need of a new gym. Luckily, they applied for and won a local Impact 100 grant, a $100,000 dollar grant awarded annually by a charitable women’s giving circle to advance the mission of a chosen nonprofit. This grant brought Rock Steady into a new era, affording them both a new gym and their first ever executive director, Joyce Johnson.

The World Championship

Johnson came to Rock Steady with over 30 year’s experience in the nonprofit sector, as well as a personal experience with Parkinson’s. Her mother had lived with the disease for over a decade before passing away and Johnson had seen firsthand the terrible toll the disease extracts.

“I had watched Parkinson’s steal my mother’s life,” Johnson says. “I knew what an awful disease it was and I was thoroughly excited that there was some way to slow down the progression.”

Her mission was to expand the model so that communities across the country could have their own Rock Steady programs. In 2012, Rock Steady began to offer training camps, where prospective coaches could come for a two day session to learn about Parkinson’s disease, the Rock Steady training method and a basic marketing plan. Upon completion of the camp, coaches would be certified to start their own Rock Steady program in their home communities as an affiliate.

The program grew slowly at first, with about ten people in each training camp. At the end of 2012, they had three affiliates. With steady growth each year, by 2015 they had expanded to 83 affiliates. Then in November of 2015, something remarkable happened. News anchor Leslie Stahl ran a story on Rock Steady Boxing on CBS’s Sunday Morning. Stahl’s husband suffers from Parkinson’s and had been attending the Rock Steady affiliate gym in New York City. Stahl had seen firsthand the benefits of the Rock Steady method and wanted to share the news with her audience. This short news spot resulted in a surge of interest in the program from all around the world.

“The website crashed, the phones crashed, everything crashed, with everyone wanting to know how to start a Rock Steady in their community” Johnson says. “As a result of this CBS special we grew monumentally, and we went from 83 affiliates in 2015 to 306 in 2016.”

The Battle Ahead

The program has continued to grow ever since. And while CBS helped lift Rock Steady to a new level, Johnson says the key to its enduring success as a nonprofit lies with the resolve and determination of those living with Parkinson’s.

“This is really 95% driven by people with Parkinson’s looking for a solution” Johnson says. “Maybe that’s what makes us a little different. Before I worked here I helped low income high achieving kids get to college,but the kids themselves didn’t know what they needed. But (Parkinson’s) is different because they’re adults and they’ve done the research and they know what they need.”

Still, with more than 60,000 people diagnosed with Parkinson’s each year, Rock Steady Boxing has their work cut out for them.

“The fact of the matter is that there are 6 or 8 million people around the world with Parkinson’s, and we’re really a drop in the bucket.” Johnson says. “We would love for there to be a Rock Steady in every community. We’ve been around for 12 years now and our network has become global with 625 affiliates in all 50 states and 10 countries, and yet, realistically we are smaller than a lot of nonprofits. We only have 9 people on headquarters staff. So the challenge for us is to figure out how to replicate Rock Steady and to do it efficiently in other places, even where we don’t speak the language.”

Part of Rock Steady’s strategy to meet this challenge is to keep their requirements simple. A Rock Steady “gym” can be run from a boxing facility, a YMCA, a senior center or just about anywhere with space for a heavy bag. Rock Steady does not place any requirements on where the classes must be held or how many people must attend. They don’t ask for monthly or weekly reports from affiliates.

“At the end of the day, each affiliate is autonomous”, Johnson says, “with the freedom to design a program that meets the needs of the people they are serving.”

The simplicity of the Rock Steady model has helped it grow and allowed its affiliates to to focus their energy on taking the fight to Parkinson’s- wherever Rock Steady Boxers gather- one punch at a time.

David Mueller is a graduate student in the Master’s in Technical Communication program at NC State University.

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