Blog originally posted by Rare Disease Report. Original article can be found here >
Buckets of ice-cold water were poured over many heads last summer, not to beat the heat but to raise awareness of amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease. Pete Frates, a 31-year-old man with ALS, is credited with jumpstarting the fundraising campaign, which quickly went viral as celebrities, politicians, athletes, students, and many others posted videos of themselves getting doused in ice water. Between July 15, 2014, and December 12, 2014, the Ice Bucket Challenge raised $220 million to fight ALS.1 More than half the funds went to the ALS Association, a Washington, DC, charity whose annual budget typically hovers around $25 million. Today, everyone is wondering how the ALS Association plans to handle the windfall.
“We’ve seen high-performing charities before, when they get this influx of cash. The expertise, the management required, it’s a challenge that is sometimes not met by even the best charities,” said Ken Berger, chief executive officer (CEO) of Charity Navigator, a charity watchdog group, in an interview with a North Carolina news outlet.2
Any concerns appear unfounded, however. The ALS Association, which plans to hire an investment firm to help manage funds netted through the Ice Bucket Challenge, is taking a prudent approach to how it spends the money. At the same time, the organization is mindful of the need for a faster pace in getting new treatments from the laboratory into practice.
“We recognize the sense of urgency felt by people living with the disease and their families and I want to assure everyone that our number one commitment is to making decisions that get treatments to patients in the fastest way possible,” said Barbara Newhouse, president and CEO of the ALS Association, in a press release.3 “Our roadmap to treatments involves collaboration with other ALS organizations and with industry, university investigators, government agencies, pharmaceutical and biotech companies and other nonprofit organizations committed to the fight against ALS.”
The ALS Association plans to triple its financial support of research.4 In October 2014, the organization announced a grant of $21.7 million from the Ice Bucket Challenge contributions plus $12.5 million in matching donations to support 6 programs designed to expedite the search for treatments and a cure for ALS.3 Four of the programs involve global alliances.
One beneficiary is Project MinE, an ongoing genetic research program at the Emory ALS Center.5 Project MinE will map and compare the DNA of 15,000 ALS patients and 7500 people without ALS for genes that might shed light on the natural history of ALS.5 Investigators for the program applied to the ALS Association for a grant well before the Ice Bucket Challenge entered the picture and were delighted to receive a $1 million commitment.
Other beneficiaries include ALS Accelerated Therapeutics, which is developing neuroimaging tools to identify potential biomarkers in patients with ALS and therapeutic approaches; the New York Genome Center; and the Neuro Collaborative, a group of 3 California laboratories.6
Money will also be used to support patients and their families more directly, through the ALS Association’s Certified Treatment Centers of Excellence and by providing funding for wheelchair ramps and transportation. Some regional ALS chapters are also using money received to open up new treatment centers.2 Additional funds will be dedicated to convening members of the ALS community to create the first guidance document for developing new ALS therapies.3
RDR and Total Orphan Drugs were proud to be part of the Ice Bucket Challenge (still waiting to hear back from our Drs Collins and Austin) and you can see hundreds of celebrities and other notables take the Ice Bucket Challenge, including Benedict Cumberbatch, One Direction, Lenoardo DiCaprio, Eminem, the cast of Glee, Justin Beiber, Daniel Radlicffe, Dolly Parton, Rhianna, Chris Hemsworth, Donald Trump, Jimmy Fallon, and Stephen Spielberg athttps://www.youtube.com/playlist?list=PLB1ygYK7cCmnZevaGkLkU5s07iz3sUyqM.
- Holan M. Ice Bucket Challenge has raised $220 million worldwide.http://www.bizjournals.com/washington/news/2014/12/12/ice-bucket-challenge-has-raised-220-million.html. Published December 12, 2014. Acce3ssed January 26, 2015.
- wfmynews.com. Where did all the ALS ice bucket challenge money go? http://www.wfmynews2.com/story/news/local/2-wants-to-know/2015/01/22/2wtk-als-ice-bucket-challenge-update/22171597. Published January 22, 2014. Accessed January 25, 2015.
- The ALS Association announces initial commitment of $21.7 million from Ice Bucket Challenge donations to expedite search for treatments and a cure for ALS [press release].http://www.alsa.org/news/media/press-releases/ibc-initial-commitment.html. Published October 2, 2014. Accessed January 25, 2015.
- Newhouse BJ. New year, new opportunities [press release].http://www.alsa.org/news/archive/research-spending-triples.html. Published December 30, 2014. Accessed January 25, 2015.
- DiLonardo MJ. How an Emory researcher benefited from the ALS Ice Bucket Challenge. Atlanta. Published January 8, 2015. Accessed January 25, 2015.
- ALS Association announces $21.7 million in funding from Ice Bucket Challenge. http://www.wcvb.com/news/als-association-announces-217m-in-funding-from-ice-bucket-challenge/28373112. Published October 2, 2014. Accessed January 25, 2015.