BOSTON- Governor Deval Patrick signed into law a bill sponsored by Senator Michael O. Moore (D-Millbury) and Representative Paul K. Frost (R-Auburn) establishing Ataxia Awareness Day in the Commonwealth.
“This legislation will bring much-needed awareness and public education to this horrible affliction,” Senator Moore stated. “I applaud John and everyone who has stepped forward and taken on the mission of bringing this issue to the forefront. With more attention and awareness given to Ataxia, together we can find a cure and bring an end to the suffering.”
Representative Frost said, “I’m pleased and honored to have co-sponsored Ataxia Awareness Day on behalf of our constituent, John Mauro and his family. I’m proud we are the first state in the nation to do so as well. Thanks to John’s efforts more and more people will better understand this disease. Though John has Ataxia himself, you constantly see him involved in the community and is finding a way to turn his struggle into positive actions and ways to help and inform others.”
Although many are not aware of Ataxia, it is estimated that 150,000 people in the United States are affected by this condition. Too often, Ataxia strikes children and young adults. Ataxia is a group of often fatal rare degenerative neurological disorders. Some symptoms of a person who may be suffering from this disease often include impairment of coordination, hearing, vision and speech. Unfortunately at this time, there is no effective treatment or cure for Ataxia.
Auburn resident John Mauro inspired Senator Moore and Representative Frost and was the driving force behind the bill. John Mauro, who suffers from Ataxia, created the event
Ride for John, held every year in Auburn, as a fundraiser for Ataxia research and serves on the Board of Directors for the National Ataxia Foundation. In 2013, Ride for John raised over $18,000 for the National Ataxia Foundation. This year’s ride is scheduled for September 20. “We are currently looking for sponsors for this year’s ride” says Mauro. Interested sponsors can contact Mauro at johnmauro62 @ gmail.com.
This bill allows the Governor to annually issue a proclamation establishing September 25 as Ataxia Awareness Day, in recognition of the thousands of individuals affected by hereditary and sporadic ataxia in the United States and the need for increased public awareness, research, prevention and support for victims and their families and recommending that the day be observed in an appropriate manner by the people.