Buckets of Ice Water Brought in More ALS Funding in 30 Days Than the Government Did in a Year

Donors around the world gave more than $100 million in the past month through the Ice Bucket Challenge.

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Stephanie Stamm and Marina Koren
Aug. 29, 2014, 9:01 a.m.

A month ago, the Na­tion­al In­sti­tutes of Health was the single largest source of re­search fund­ing for amyotroph­ic lat­er­al scler­osis, or ALS, in the world.

Now, it’s a bunch of people dump­ing buck­ets full of ice wa­ter over their heads.

The ALS As­so­ci­ation said Fri­day it has re­ceived more than $100 mil­lion in dona­tions from people around the world in the last 30 days thanks to the ul­tra-vir­al Ice Buck­et Chal­lenge. The or­gan­iz­a­tion re­ceived $2.8 mil­lion dur­ing the same peri­od last year. That’s a whop­ping 3,500 per­cent in­crease.

Participants tip buckets of ice water over their heads as they take part in the World Record Ice Bucket Challenge at Etihad Stadium on Aug. 22 in Melbourne, Australia. National Journal

The sum­mer’s dona­tions have ec­lipsed the amount of fund­ing the NIH, a fed­er­al fa­cil­ity, re­ceives each year for re­search for ALS, a pro­gress­ive neuro­de­gen­er­at­ive dis­ease. The $100 mil­lion is more than double the amount the NIH re­ceived for re­search in 2013 ($39 mil­lion), and the amount it is pro­jec­ted to re­ceive in fisc­al year 2014, which ends next month ($40 mil­lion).

An­nu­al fed­er­al fund­ing for ALS has de­creased stead­ily in the last few years, from $59 mil­lion in 2010 to $40 mil­lion today. The de­cline is thanks to the Budget Con­trol Act of 2011, which was passed to pro­tect the U.S. from de­fault. The le­gis­la­tion de­livered across-the-board budget cuts of about 5 per­cent in vari­ous fed­er­al agen­cies, in­clud­ing the NIH and its Na­tion­al In­sti­tute of Neur­o­lo­gic­al Dis­orders and Stroke pro­gram.

More than a dozen law­makers from both parties have re­ceived cri­ti­cism for vot­ing for the 2011 law and par­ti­cip­at­ing in the Ice Buck­et Chal­lenge this sum­mer. But the seem­ingly con­tra­dict­ory de­cisions don’t ex­actly make them hy­po­crites, ex­plains The Huff­ing­ton Post‘s Sam Stein:

Many of them re­luct­antly cast that vote, and oth­ers are fine with fund­ing ALS re­search so long as the fund­ing comes from private sources and not fed­er­al taxes. But the con­tra­dic­tion does ex­pose the curi­ous ways in which gov­ern­ment of­fi­cials of­ten end up deal­ing with prob­lems they cre­ated.

Thanks to the Ice Buck­et Chal­lenge, private sources, like yet an­oth­er one of your Face­book friends, are pick­ing up the tab where the gov­ern­ment can’t.

There is no cure for ALS, and there is only one drug for the dis­ease ap­proved by the U.S. Food and Drug Ad­min­is­tra­tion. The ALS As­so­ci­ation said Fri­day that the group will put dona­tions from the Ice Buck­et Chal­lenge to­ward re­search and pa­tient care. “We re­cog­nize a pro­found sense of ur­gency and are en­gaged in dis­cus­sions about how we’re go­ing to put this money to work in the short term and in­to the fu­ture,” ALS As­so­ci­ation Pres­id­ent Bar­bara Ne­w­house said in a state­ment.

About 5,600 people are dia­gnosed with ALS in the United States each year. Most die with­in two to five years.

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