10 Years in the making and much progress has been made, but there is still much more work to be done.
Thanks to Auburn resident John Mauro, who has organized numerous walk and rolls over the years, we recently celebrated our 10th Annual Walk and Roll for Ataxia. With the support of the Rhode Island Chapter, the walk was held at Bristol Town Beach on Saturday September 30th, 2017.
“Over the years we realized the struggles of trying to raise funding and awareness of a disease that so few people are affected. Many people have never even heard of Ataxia.” Said Mauro.
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.
Over the years John Mauro and his wife Dana have tirelessly worked to promote awareness. Not only did they begin the 1st ever walk in Roll for Ataxia in Central Mass., they also created the Central MA Ataxia Support Group. With the help of a small group of family and friends (or friends they consider family) they 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.
John Mauro 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.
Spreading Awareness is a passion for the Mauros, as John himself was diagnosed 12 years ago with Ataxia. Their mission is to educate, raise awareness, and fund raise in hopes to one day find a cure. They could use your help.
If you are a principal or teacher and would like them to visit your class to educate them about what Ataxia is, as they have now done at UMass-Amherst and Northeastern University, if you have Ataxia and want to be a part of a support group, if you are a company and would like more information on how you can be a sponsor or help with funding for research, or if you would like to volunteer for a walk and roll or make a donation to a worthy cause, please contact John Mauro at firstname.lastname@example.org.