“Ice bucket challenge” credited with helping find gene linked to ALS

WTNH/Josh Scheinblum


MILFORD, Conn. (WTNH) – Two years ago videos featuring people dumping buckets of ice water on their heads took over social media.

It was part of a phenomenon called the “ice bucket challenge” where people would challenge others to raise funds to help fight a neuro-degenerative disease called ALS, often referred to as Lou Gehrig’s disease. And raise money they did. In a matter of weeks, participants donated $115 million to the ALS Association. That investment is already paying big dividends, says ALS association Connecticut chapter Executive Director and ice bucket challenger, Mike Burke.

“We did a really great job putting that money where donors intended for it to go, that is in research,” said Burke.

This week there was a breakthrough. Researchers working on a project for the University of Massachusetts Medical School identified a gene, called NEK1, that can be linked to the illness.

“It’s exciting because we now know another mechanism for why people may get ALS,” said Dr. Kevin Felice, a neurologist at the Hospital for Special Care in New Britain.

Dr. Felice says genetic ALS impacts approximately 10 percent of those afflicted with the disease and that the ice bucket challenge had consequences in Connecticut.

“Part of the ice bucket challenge money goes to help fund clinics like ours so it’s real important,” said Dr. Felice.

Burke calls what researchers found “a quick yield of results.” Results that have given ALS patients new hope.

“The phones are abuzz and email and Facebook. Patients are saying, ‘what does this mean for me?’ Should I get tested to see if I perhaps I have this gene?’ And these are all great questions,” said Dr. Felice.

There are approximately 300 people living with ALS in Connecticut Dr. Felice estimates.

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