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It really worked: Ice Bucket Challenge brings new hope for ALS research

MILFORD — The ALS Ice Bucket Challenge, which first splashed across social media two years ago, has raised over $100 million, opening the floodgates to so...
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MILFORD -- The ALS Ice Bucket Challenge, which first splashed across social media two years ago, has raised over $100 million, opening the floodgates to some groundbreaking research.

According to a paper published in "Nature Genetics," researchers have identified a new ALS gene, NEK1, which now ranks among the most common genes that contribute to the disease, providing scientists with another potential target for to use for developing therapies. This was the largest-ever study of familial/inherited ALS, and involved contributions from over 80 researchers in 11 countries.

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which leads to total paralysis and death usually within two to five years of diagnosis.

While 10 percent of ALS is familial, meaning it’s genetic, the other 90 percent of ALS cases are considered sporadic, or without a family history. However, it’s very likely that genetics contribute, directly or indirectly, to a much larger percentage of ALS cases.

"Scientists have to find out if a relationship truly exists between the existence of the gene, which does a lot of important things in our body, and the prevalence of symptoms," said Mike Burke, the executive director for the ALS Association's Connecticut chapter.

Thursday marks the eighth anniversary of Scott Anderson of Fairfield's diagnosis with ALS. His first thought was how would his then 2-year-old son remember him.

"My number one goal is to be the best father I can to my (now) 9-year-old son," said Anderson, who took part in the ALS Ice Bucket Challenge two years ago with his son, Owen.

Roughly 100 people will succumb to ALS in Connecticut this year. Now, though, there are buckets full of hope.

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