By Denise A. Kapulka
Originally appeared in The Yankee XPress, September 21, 2016. Reprinted with permission.
International Ataxia Awareness Day is just around the corner; it is held yearly on September 25. Participants around the world participate by holding an Annual Walk n’ Roll.
Auburn resident John Mauro has Ataxia; he was diagnosed 11 years ago.
What is Ataxia? Ataxia is a lack of muscle coordination which may affect speech, eye movements, the ability to swallow, walking, picking up objects and other voluntary movements. A person with Ataxia may have damage in the part of the brain that controls muscle coordination – the cerebellum.
Sadly, at the present time, there is no cure. Funds are needed for research in the hope of finding a cure. An increase in awareness of Ataxia is also needed. It is challenging to raise funds for a disease that is not well known and effects only an estimated 150,000 Americans.
John started unofficially fundraising for Ataxia 10 years ago. That year he hosted a Bicycles for Ataxia ride on a cold October day. Only 15 people participated, mostly family and close friends. They showed up in hats, gloves and winter gear, hoping to ride the five miles in the light flurries of snow.
As the ride began John’s son Zack and the entire Auburn High School football team joined them, running behind the bicyclists. Nothing was said ahead of time that the team would be participating in the ride.
John and the rest of the riders were overwhelmed that this group of young men would run along with them to support their cause. Much respect is due the coaches and staff of the Auburn Football team for role modeling such community support and spirit.
Zack has proven to be a great help and supporter of this cause and all the events that are held, as has his older son Nick.
That first bicycling fundraiser didn’t draw a very large crowd. But the following year Mauro established the Central Mass Ataxia Group and started the 1st Central Mass Ataxia Walk n’ Roll. The Central Mass Ataxia Group consists of six committee members who have spent the last few years focused on raising awareness. Some of their efforts include speaking engagements at local high schools and colleges to teach students about the disease. Mauro’s wife Dana has created awareness videos that are shared on twitter and YouTube. The link to those videos is: https://youtube/OCSFzVi4rt4?list=PLT6oBG7P0wnYciM7QCNOkNgW543CkiDrs. …
The group has worked with the state house, Senator Michael Moore and Representative Paul Frost, to recognize September 25 as Ataxia Awareness Day in Massachusetts. Other states have now followed, working with their legislators to do the same.
Much progress has been made but there is more work to be done. John Mauro also is the President/Founder of the Central Ma Ataxia Support Group, and has founded and championed support groups in New York/New Jersey, Rhode Island, New Hampshire, Connecticut, Maine, Ohio and Pennsylvania. He has united this collection of support groups under a larger umbrella which he named the New England Group. In 2014 he was appointed to the board for the National Ataxia Foundation.
This year, the 9th annual Walk n’ Roll was held on Sept 10. Since its inception the Walk and Rolls have been held in Auburn at Lamasky field. The Rhode Island Support Group graciously offered to host this year’s walk.
It was held at Bristol Town Beach. Participation has greatly improved from that first year; approximately 300 people attended.
We still need help to reach our goal; if you can’t join us please consider making a donationhttp://ataxia.donorpages.com/WalknRoll2016NewEnglandWnR/.