Local Clinic Will Benefit from Skyrocketing ALS Donations

By Steph Machado

Published 08/21 2014 07:22PM

Updated 08/21 2014 08:08PM

COLCHESTER, Vt. - Over the past few weeks, it seems like everyone has dumped buckets of ice over the heads and posted it online.

The videos caused a lot of laughs on social media, and it turns out--a lot more.

The numbers don't lie. Since July 29, the ALS Association has received $41.8 million nationwide. In that same time period last year, it received $1.9 million.

"It definitely has made a difference," said Amy Kuzma, the director of the Northern New England Chapter of the ALS Association. "It's a silly social media phenomenon...I think the more people hear about it and see how devastating it is, they're moved to do something about it."

Donations are up more than 300% at the Northern New England Chapter, which serves Vermont, New Hampshire and Maine. Kuzma says local donations stay in our area. The local chapter gives about $25,000 to the ALS Clinic at Fletcher Allen Health Care. That money buys equipment like leg braces and breathing apparatuses.

Dr. Rup Tandan is the Attending Neurologist at Fletcher Allen. He has been researching the rate and fatal disease, which has no cure, for 30 years. He treats about 60 patients at the clinic.

"In some, it begins with slurred speech and difficulty swallowing and chewing. In others, it begins with weakness and loss of muscles in the arms and legs," Dr. Tandan said. For all, it's almost certainly a death sentence, with a life expectancy of 2-5 years. However, Dr. Tandan says some people have had what he called "Reverse ALS."

"They are patients that fulfill all the criteria for the disease, they progress with the disease and then by some inexplicable reason, they stabilize and some even get better."

He hopes some of the new funds can go toward studying those patients, to move toward a cure.

The ALS Association is still figuring out exactly how to distribute the unexpected influx.

"I think every non-profit has that wish list. This gives us a chance to really look at it and look at these programs that we want to put into play."

Click here to donate to the ALS Association of Northern New England.
Click here to donate to the ALS Association of Upstate New York.

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