The ice bucket challenge’s scientific success restored my faith in fundraising | Mary Valle

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Im always wary of disease money grabs. The donation pitch can be misleading. But the viral ALS gimmick led to real change

It is absolutely thrilling that money raised by the ice bucket challenge that seemingly overblown, internet-BS game parading as a fundraiser for ALS has actually caused a real thing to happen: more than $100m in donations funded distinct scientific progress in our understanding of the disease.

This contradicts all my feelings about gimmick fundraisers, which I, and many others, usually find trite or even annoying. It can feel like money keeps getting shoveled in to the charity-industrial complex with very little in the way of progress coming out.

The whole thing diseases, money, research, hope, death makes me feel a little weary at times. There are so many charities to donate to and so many diseases to eradicate, and dumping buckets of ice over ones head to post the film on Facebook seemed too silly too much of a celebrity-driven trend to have substance.

For example, breast cancer seems to get a queens ransom in money every Breast Cancer Awareness Month, what with all the fun runs, NFL pageants and carcinogenic snack food tie-ins. This actually causes resentment, since many less sexy diseases dont get the same attention.

While much of this money is funding research and subsidizing treatment, etc, a significant amount of it is not, going instead to running the charity or to publicity. There are even products for sale that claim to give a certain amount of profits to breast cancer research that dont. Its enough to make many breast cancer survivors hate breast cancer fundraising.

Not only that, some organizations actually spread falsehoods regarding the very diseases they are purporting to fund research for. Many women who get breast cancer are shocked to learn that all the slogans and soundbites charities use to solicit money early detection is the best cure; mammograms will save your life arent all theyve cracked up to be and indeed, there is no cure for breast cancer.

Theres no cure for ALS either the disease is usually fatal within two to five years of diagnosis but the Ice Bucket Challenge, whose funds went to the ALS Association, may have brought us closer. The money funded an international gene-mapping project, Project MinE, which allowed scientists to map the genome of 15,000 people who have ALS. By analyzing this large volume of data, scientists discovered a new gene called NEK1, which has been identified as one of the most common genes associated with ALS.

Maybe disease fundraising needs a new look in light of the Ice Bucket Challenges impact. After all, youll find a great many nonprofits worth your support if you do your homework. The ALS Association gives the vast majority of its donations to fund research, rather than outreach or screenings of questionable worth.

And if youre going to give time and resources toward a cause, fun is a concept thats growing on me. Its easily shareable, making it easy to raise awareness without spending large chunks of a nonprofits budget on that cause. It can make giving enthralling and contagious. Maybe kittens could be deployed for future charity campaigns. Maybe impromptu flag football. Scavenger hunts, real and digital. Something with those crazy milkshake deals. How about a Dougie challenge? Or real-life instant memes? Or maybe Post Your Snacks for Research Cash?

The ice bucket challenge started with a mere bucket of ice. Who knows what a couple of puppies might accomplish.

Read more: www.theguardian.com

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