Bigger than ever

Posted 9/21/17

Bigger than ever The 16th annual Walk to Defeat ALS held Sunday at the Confreda Sports Complex brought a turnout of more than 700 people, raising more than $100,000 to help support the work of the local chapter that underwrites the cost of a

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Bigger than ever

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The 16th annual Walk to Defeat ALS held Sunday at the Confreda Sports Complex brought a turnout of more than 700 people, raising more than $100,000 to help support the work of the local chapter that underwrites the cost of a multi-disciplinary clinic in Providence. Apart from raising awareness of the disease, which affects about 70 Rhode Islanders at this time, the chapter is the host of an ALS symposium that will be held Oct. 22 from 12:30 to 3 p.m. at Hilton Garden. Chapter President John R. Paglarini has no personal connection to the disease, but said he became involved because he wanted to help. He pointed out that teams of family and friends of those with the disease or having lost a loved one to ALS are the backbone of the fund raising campaign. He said as a result of the millions raised by the ice bucket challenge that was so popular a new drug – Radicava – gained FDA approval last month. The drug has been shown to be effective in delaying early stages of the disease, however, he added, it is costly and the issue is whether it would be covered by health insurance companies. He put the cost at $150,000 a year. (Text and photos by John Howell) 

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