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ALS Ice Bucket Challenge Brings Attention to the Need For Private Funding

August 22, 2014

The ALS Ice Bucket Challenge – the social media phenomenon in which people post videos of themselves dumping buckets of water on their heads – has swept through social media like wildfire as part of an effort to raise both awareness and funding for ALS research.

It’s pretty safe to say that it’s working.  As of Thursday morning, the ALS Association had received $41.8 million from existing donors and more than 739,000 new donors over the last three weeks.  The Challenge has acquired a long list of notable participants including Michael Jordan, Bill Gates, and even President George W. Bush, which has helped tremendously in spreading the word about this debilitating and terminal illness.

[caption id="attachment_16784" align="alignright" width="192"]14790943537_b4f9803575_m Photo by rpavich[/caption]

The biotech community far and wide has shown its support for the campaign as well.  For instance, dozens of researchers at Biogen Idec accepted the challenge along with Doug Williams, the company’s Executive Vice President of Research and Development.  BIO’s very own Jeff Sadosky, Managing Director of Communications, also braved the ice bucket for the cause.

The Challenge is a good example of the enormous potential to generate private funding that can fulfill a critical need toward developing cures and treatments for patients suffering from this devastating disease.

However, as Jason Millman at The Washington Post points out,

“It’s hard to predict what it’s going to cost to find a cure. But the ALS Association’s donation surge in recent weeks – and whatever future donations the ice bucket challenge likely will generate – won’t be enough on its own to fund the research and development that’s needed to eliminate this disease.”

Federal funding, which the ALS Association heavily relies on each year, has continued to decline as the budget for the NIH has experienced drastic cuts over the past decade along with additional cuts due to sequestration.  In fact, the donations given by way of the Challenge amount to more than the $40 million that the NIH has allocated toward ALS research for the entire year.

Because of this funding gap, the private sector and philanthropy are becoming increasingly important in the quest to find treatments and cures for ALS and other diseases.  For example, biotech startup Voyager Therapeutics launched earlier this year with $45 million in private funding in order to develop a gene therapy for nervous-system disorders such as ALS. The ALS Therapy Development Institute, a nonprofit biotech, also has directly benefited from the Ice Bucket Challenge and received ten times the amount of donations it typically receives.

In an age when social media trends lose steam just as quickly as they gain it, it will be interesting to see how much more money will be given to the cause.  Hopefully, this trend has a lot more life left in it.


Kerri Nelson provides executive support for BIO's communications department.