Opinion: Take the ALS Ice Bucket Challenge

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The Ice Buck chal­lenge

Tay­lor Swift did it. Lady Gaga did it. Eli Man­ning did it. In fact, so many par­tic­i­pated in the Ice Bucket Chal­lenge that $220 mil­lion was raised to fight ALS, or Lou Gehrig’s dis­ease. So one year af­ter the phe­nom­e­non, how is the money be­ing spent? In New York, Dr. Robert Dar­nell is one of the ben­e­fi­cia­ries. The New York Genome Cen­ter, where he is the pres­i­dent and sci­en­tific di­rec­tor, re­ceived $2.5 mil­lion in chal­lenge money from the ALS As­so­ci­a­tion. Half of that money came from the na­tional head­quar­ters and half from the New York chap­ter of the group, which took in about $4 mil­lion in chal­lenge cash. “We had no idea how suc­cess­ful the Ice Bucket Chal­lenge would be,” Dar­nell told The Post. “This is a won­der­ful sur­prise that was given to us by the cit­i­zens of the world.” The study at the New York Genome Cen­ter will in­volve se­quenc­ing the DNA from ALS pa­tients. There is no cure for ALS. “All of this is a game of try­ing to find the Lou Gehrig’s nee­dle in the big haystack of DNA,” Dar­nell said. “The tech­nol­ogy for do­ing DNA se­quenc­ing is rapidly im­prov­ing and that’s al­low­ing us to do finer and finer searches for nee­dles in haystacks.” Rows and rows of sta­teof­the art ma­chin­ery at the Soho­based cen­ter can se­quence the DNA of one per­son about ev­ery 30 min­utes. Last year’s fund­rais­ing phe­nom­e­non is es­ti­mated to have brought in $220 mil­lion world­wide. Of that, $115 mil­lion went to the na­tional head­quar­ters of the ALS As­so­ci­a­tion in Washington, DC. The or­ga­ni­za­tion said it has ear­marked $47 mil­lion of the chal­lenge money so far, in­clud­ing $33.5 mil­lion go­ing to re­search. In the case of The Genome Cen­ter project, the ALS As­so­ci­a­tion fund­ing matched a $2.5 mil­lion grant from the Tow Foun­da­tion. Dar­nell, a neu­rol­o­gist who stud­ied ALS for years as a re­searcher at Rock­e­feller Univer­sity, said the cause of the dis­ease is prob­a­bly more com­pli­cated than a sin­gle bad gene. “That would be too easy,” he said. “It might be a com­bi­na­tion of genes, and fig­ur­ing that out is a very com­pli­cated ques­tion that re­quires the ex­per­tise of many dif­fer­ent sci­en­tists — ge­nomic sci­en­tists, com­puter en­gi­neers, maybe even mathematicians.” The non­profit Genome Cen­ter opened its Soho quar­ters two years ago. Re­search is also fo­cus­ing on brain cancer and rheuma­toid arthri­tis. The ALS As­so­ci­a­tion kicked off a new round of chal­lenges this month, ask­ing peo­ple to get wet, post a video on so­cial me­dia and make a do­na­tion.

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