If you haven’t yet taken the Ice Bucket Challenge or seen dozens of videos of others pouring a pail of frigid water over their heads, you’re likely reading this in print because you don’t own a computer or smart phone. For the other 85 percent of Americans, ice bucket fatigue is beginning to set in and one wonders whether the $94 million donated so far to the ALS Association will provide a shot at curing ALS, also known as “Lou Gehrig’s Disease,” or at least accelerating the discovery of better treatments.
Barbara Newhouse, president and CEO of the ALS Association, said the non-profit group is “absolutely committed to transparency” and will “invest these dollars wisely in areas that will have maximum impact on the fight against this devastating disease.” The group has the highest four-star rating from charity navigator, a non-profit watchdog group. In 2013, the ALS Association used 79 percent of donated funds on research grants, education efforts, and patient services, according to the association’s website. The rest of the funds went toward fund-raising efforts and administrative costs.
(The American Cancer Society, by comparison, has a two-star rating with 59 percent of donations going to programs and research, while the rest goes toward fund-raising and staff expenses.)
ALS, short for amyotrophic lateral sclerosis, strikes 1 in 1,000 Americans and destroys motor nerve cells in the brain and spinal cord causing progressive paralysis and death, typically within two to five years. How the Ice Bucket Challenge got started remains a matter of debate, but 29-year-old ALS patient Peter Frates, a former captain of the Boston College baseball team, was instrumental in helping it go viral through a social media campaign he initiated in mid-July.
Boston ALS researchers, who have all received grants from the ALS Association, say the influx of donations couldn’t come at a better time. Recent discoveries of more than 35 gene mutations linked to ALS and new therapies in the pipeline to target those mutations have left scientists more optimistic than they were a decade ago about potential new treatments that could significantly slow or halt the progression of the disease, said Dr. Robert Brown, chair of neurology at UMass Medical School in Worcester.
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