Policy/Biz

ALS Ice Bucket Challenge Rakes In $100M For Foundation, Confuses Researchers How To Spend

ALSIceBucket
The ALS Ice Bucket Challenge has passed the $100-million mark. Where will all that money go? Reuters

People have been dumping buckets of ice water (and chocolate and sand) on their heads for weeks now, and according to the latest figures surrounding the curious practice, now known as the ALS Ice Bucket Challenge, donations have passed the $100-million mark.

The problem, unfortunately, is researchers aren’t quite sure how to spend their money. Amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, carries no cure and offers no known cause. The neurodegenerative disease affects muscle movement and eventually leads to paralysis, and while scientists have pinned down the genetic component to a single gene — a mutation of the SOD1 gene — as the probable cause, attacking this gene alone won’t solve all the problems ALS patients face.

Dr. James Berry, co-director of the ALS clinic at Massachusetts General Hospital, is slated to begin trials alongside Dr. Robert Brown, chair of neurology at the University of Massachusetts Medical School, on an experimental drug derived from stem cells. If all goes to plan, the drug will “create a much better environment for the neurons,” Berry told The Boston Globe, “helping to protect those that are still functioning well and possibly repair those that are deteriorating.”

The largest chunk of donation money to the ALS Association — around 32 percent — goes toward public education. Research is the next largest, at 28 percent. To consider the true weight of the Ice Bucket Challenge, consider the ALS Association took in roughly $26.3 million during the entire 2013-2014 fiscal year. Between July and August of this year, that number has already quadrupled.

But Berry and Brown’s idea isn’t the only one that earns this influx of revenue. Scientists are also working to expand gene therapies given to patients. The research has been five years in the making, helped along by the massive human genome project and discoveries into alternative gene mutations (at least 35, to be specific) that could offer clues about ALS’ root cause or causes. Some scientists view this is as less a case of paralysis by analysis so much as a wealth of unexplored opportunities.

“The most exciting, high-risk, high-gain projects are often funded by private agencies like the ALS Association rather than the federal government,” Brown told The Globe. Added a fellow ALS researcher, from Brandeis University, Suzanne Paradis, the additional donation money is likely to be instrumental in getting new trial opportunities off the ground. Beginning with diagnosis, ALS patients carry a life expectancy of two to five years. Fewer than 10 percent of patients make it past the 10-year mark.

“The bottom line,” she said, “is that there are so many ideas for ALS treatments that all look really exciting, but it’s not a good plan to put all the eggs in one basket. We need money to put eggs into all the baskets.”

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