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Congratulations to John Ball, recipient of the 2009 Alan Bonander Humanitarian Award

The Alan Bonander Humanitarian Award will be presented to John Ball of Whittier, California at the 15th Parkinson’s Unity Walk in Central Park.

John Ball has been living with Parkinson’s disease since his mid-twenties, a time so long ago that the term “young-onset” hadn’t yet been invented. After nearly 12 years of what he calls the “elimination rounds” during which a series of diseases was proposed and then discarded for lack of evidence, he was finally diagnosed with Parkinsonism in June, 1983. That diagnosis was later modified to Parkinson’s disease by a more knowledgeable doctor. Finally knowing the name of his condition helped Ball accept it and learn to live fully in spite of it. One of the keys to Ball’s symptom management has been a rigorous exercise discipline. It was running that finally brought him into the Parkinson’s community. In 1996 Ball ran the Los Angeles marathon and wrote about the experience for the National Parkinson’s Foundation newsletter. The response from other patients was so gratifying that Ball decided to do whatever he could to help his fellow-sufferers. Now, mid-way through his seventh decade, John considers himself a seasoned veteran of this disease. Although too old to qualify for the young-onset sobriquet, he feels a responsibility to help those younger patients who are facing a long, complicated challenge.

While running the LA marathon for the third time, John inspired his friend and fellow PWP Mary Yost to take on the challenge of walking the 26.2 miles. Mary decided to use the race to create a fundraising opportunity, and together with several friends in the Parkinson’s community, including Margot Zobel and Ken Aidekman co-founders of the Parkinson’s Unity Walk, they formed Team Parkinson. Their first event was the LA Marathon in March, 2000 and they raised nearly $50,000. Since then, Ball and his wife, Edna, have become National Co-Chairs of the Team and have expanded its role in both the running community and the patient community. Through John’s dedicated running and Edna’s unwavering support, runners throughout the world have heard of Team Parkinson and have chosen to race and raise money to help find a cure for this disease. Since its inception, Team Parkinson has raised over $1.5 million for scientific research, and has inspired countless other Parkinson’s patients to complete marathons of their own.

Ball has now completed over 20 full marathons and several “century“ bike rides. His work with neuroscientists studying the role of environmental factors on brain plasticity has shown that running and other forms of diligent exercise has more than cosmetic value for PD patients. It can create new pathways in the brain that can help restore movement, gait and balance.

When Ball wrote that first article about running the marathon, it triggered a writing habit he seems unable to break. After ten years of struggling with false starts and misdirections, Ball has completed a memoir about the experience of living and running with PD, called “Living Well, Running Hard: Lessons Learned from Living with Parkinson’s Disease.” It describes his transformation from isolation to community and from patient to patient advocate. For more than a decade he has actively supported PAN and walked the halls of Congress year after year. He has attended the Parkinson’s Unity Walk each of the last five years. His goal is to be available for every support group, every conference, and every individual PWP who wants or needs his help. Ball says, “You can’t make a difference if you don’t show up. So I need to be where the action is, putting a face behind the Parkinson’s mask. I like the idea that by living my life the best I can, I can make a difference in other people’s quality of life.” John’s goals in life have never been about money or fame, but he recognizes the value of each to gain attention to the needs of this community. Ball says, “I certainly can’t do what Michael J. Fox or Muhammad Ali can do to raise awareness and media attention to our cause, but I can run and ride a bike and try to inspire others to take control of their lives and face this challenge with determination.”

A letter from Mary Yost, co-founder Team Parkinson, to John Ball:

Dear John,

The two times when you decided to stop running were life changing moments for me, maybe for us both.

In 1999 at mile 23 of the LA Marathon, I saw you running by and shouted out "Go, John Ball." You paused for a hug and a laugh, which took precious minutes off your time. The legend was true --- a man with Parkinson's running marathons!

The other time you stopped running was several years after Team Parkinson had been going strong. It was the year I'd dreaded -- the year when you weren't able to run. I'd thought it would be devastating. John Ball, not running? What was I thinking? Though a change in medication from a clinical trial kept you from running yourself that day, you used the time by popping up all along the race to run beside our Team members, cheering them on. It was also the year that our friend Dan Kiefer was running. He tried to smile as he passed our cheering corner near the finish line, "Go, Dan Kiefer!" After he staggered by, we had a hug and a good cry. Such a distance we'd come, such a distance we have to go.

You will have heard many stories about Alan Bonander by now. For me, the best description of Alan was what Carol Walton said at his funeral -- to the effect that he wore so many hats and covered so many bases… it was going to take all of us pick up his baton. Parts of him that shine through in you are his fearlessness and empathy. No person was too grand or too small to be treated with anything other than respect and kindliness. Just as you inspired me to walk the marathon and work for Team Parkinson, Alan's irresistible insistence nudged me into forming support groups and editing stories for his newsletter. Just as you proved that one missed marathon wouldn't stop you from forging on, Alan never stopped looking ahead. The last project I remember working on with him was designing a kind of Utopian treatment and living center for people with severe Parkinson's. He must be up there, free from PD, smiling in approval
that John Ball won his Award.



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