Ice Bucket Challenge: One Year Later - NECN
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Ice Bucket Challenge: One Year Later

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    NEWSLETTERS

    Ice Bucket Challenge: One Year Later

    The family of Paul Cellucci is proud of how much awareness has grown since the former Massachusetts governor's death from ALS in 2013. (Published Thursday, July 23, 2015)

    The Ice Bucket Challenge took the nation by storm last August, raising awareness of ALS and roughly $115 million for the ALS Association to try to find a cure for the terminal disease.

    So what's happening with all those donations spurred by your videos?

    "This isn't money that's going to waste," said Dr. John Landers, a Professor of Neurology at UMass Medical School

    Thanks in part to the money raised by the Ice Bucket Challenge the Landers Lab here at UMass Medical School in Worcester was able to join in on a worldwide ALS research project called Project MinE.

    Dr. Landers, the co-leader of Project MinE in the US, says the Ice Bucket money is helping Project MinE with the monumental task of comparing the DNA of 15,000 ALS patients with 7,500 people who don't have ALS to try to isolate gene mutations or genetic factors that are involved with ALS.

    "If you actually took 5500 copies of 'War and Peace' and put it on your desk and I said there was one misspelled word in these books go find it, that is essentially what we're trying to accomplish here," said Dr. Landers.

    No easy feat, but for those who have watched their loved ones battle the debilitating disease like the family of the late Massachusetts Governor Paul Cellucci, it is essential to finding a cure.

    In August 2014, Governor Cellucci’s widow Jan said, "The amount of awareness has just grown exponentially."

    And the awareness has spread beyond the Ice Bucket Challenge.

    Since necn talked to Jan Cellucci last year, there have been more than 1,700 individual donors to the UMass ALS Cellucci Fund.

    "That infusion of awareness and particularly money is hopefully going to mean something big in the future," said Gov. Cellucci's son-in-law, Craig Adams.

    "We've brought in all this money but we've got to keep it going," said Gov. Cellucci's daughter, Anne Adams.

    And if you don't believe them how important this is, take it from Governor Cellucci's grandkids - 6-year-old Frankie and nearly-8-year-old Rhys, who vow to find a cure in their lifetime.

    "It feels awesome because I know how hard it is to go through all of this so I'm really glad that people are doing this," said Frankie Adams.

    "If they don't find it, I'll try and be one of those scientists and try and find a cure," said Rhys Adams.

    The Second Annual Governor Cellucci Tribute Road Race is at 9 a.m. Saturday, starting at the Elks Lodge in Hudson.

    Registration for the race is closed, but you can still cheer on runners or make a donation to the UMass ALS Cellucci Fund at www.umassals.com.

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