You remember the ALS Ice Bucket Challenge—the one that covered your Facebook newsfeed with videos of your friends shrieking as freezing water was poured over them? Well, it’s back on the radar, but don’t break out your buckets just yet, as the campaign itself has not resumed. Rather, it’s back in the news for a very big reason, one that could change the lives of those affected by the neurodegenerative disorder. As the ALS Association announced earlier this week, donations via the fundraiser to Project MinE, a study spearheaded by doctors at University of Massachusetts Medical School and Emory University, enabled the remarkable discovery of a gene that contributes to the disease.
That gene—the third scientists have confirmed to have ties to ALS—is called NEK1, and its discovery is an especially important step, as nearly 10 percent of all those affected inherited the disease genetically. In essence, NEK1 provides another target area for cure and prevention, hopefully putting researchers one step closer to finding a treatment.
This is particularly rewarding news for Bill Monti, who, along with his wife Fran, co-chairs the annual Westchester Walk to Defeat ALS. The Montis lost their son, Glenn, to the disease in 2000, and have been passionate advocates for related research ever since, including awarding an annual scholarship in Glenn’s name to a local student pursuing the medical field or with personal connections to sufferers of life-threatening illness.
“This is, to me, a seminal moment in that now there is something specific that the researchers can hang their goals on,” says Monti. He acknowledges that NEK1 is just “one piece of a massive puzzle,” but reaffirms that “the Ice Bucket Challenge is what really prompted a lot more money being distributed to people who are very serious about researching this particular disease.”
As for why it took something as unconventional as the Challenge to accelerate fundraising, Monti says simply, “Because it gets attention. Anything that causes people to look at something a little more carefully than what they may have otherwise, say if it hadn’t touched them in some way, I think is a good thing. Even if they don’t rise to the occasion to make a donation, it makes them aware of what’s happening to others in the world.
Monti also knows that this discovery can’t encourage complacency. He points to his four grandkids—two of whom were Glenn’s children—as reason enough for he, Fran, and everyone else in Westchester and beyond “to stay with this and to become part of that community, to consistently be part of that community, because if it is an inherited disease, I sure would like to help them find a cure for it.”
