Ice Bucket Challenge funds went to notable projects, researchers

The Ice Bucket Challenge — which saw tens of thousands of people dump ice water on their heads in the summer of 2014 — brought millions of dollars to Lou Gehrig’s disease, also known as ALS, research, leading to the discovery of key genes and therapies that slow the deadly disease’s progression.

“The Ice Bucket Challenge brought a sense of awareness — the great thing was not only people love watching the crazy videos but people went to the website and learned about it,” said Lynn Aaronson, executive director of the ALS Association Massachusetts Chapter. “I think we’re really on the cusp of some exciting times in ALS research.”

Before the Ice Bucket Challenge, many people had never heard of the illness. But that changed overnight as the push went viral.

The ALS Association took in $115 million nationwide after the challenge went viral, and $77 million of that was put directly into research, Aaronson said.

Among the researchers and efforts being funded by this money are:

• The ALS ACT — $10,500,000. An academic-foundation-industry partnership to accelerate treatments for people living with ALS.

• Grants to treatment centers — $3,315,000. This money focuses on the care that works toward longer survival and quality of life for patients living with ALS.

• Dr. James Berry, Massachusetts General Hospital — $1,000,000. Projects to help diagnose and track the progression of ALS.

• Dr. Robert Brown, University of Massachusetts — $2,500,000. Research to develop therapies that silence genes responsible for familial ALS, which accounts for about 10 percent of ALS cases.

• Dr. Nazem Atassi, Massachusetts General Hospital (in partnership with General Electric) — $3,929,181. The overall goal of this project is to use advanced imaging techniques to identify nerve damage and brain inflammation in patients with ALS.

For a complete list of Ice Bucket Challenge spending, visit web.alsa.org/site/ PageNavigator/ice_bucket_ challenge_spending.html.