Ice Bucket Chal­lenge funds went to no­table projects, re­searchers

Boston Herald - - NEWS - By LIND­SAY KAL­TER — lind­say.kal­ter@boston­her­ald.com

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.

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