Additional $12.5 Million in Matching Gifts Secured Bring Total Commitment to $34.2 million
After the generous outpouring of support from people all around the globe due to this summer’s Ice Bucket Challenge, the Board of Trustees of The ALS Association has approved an initial expenditure of $21.7 million in funding to support six programs and initiatives to expedite the search for treatments and a cure for amyotrophic lateral sclerosis (ALS). Additionally, $12.5 million in matching donations bring the total commitment to $34.2 million.
Four of these projects involve global research cooperative alliances that would not have moved forward without this significant funding from The Association, made possible through the generosity of donors worldwide, along with matching gifts.
“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. “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.”
During a 30-day period this summer, The ALS Association received more than $100 million in donations. Over the last few weeks, The Association has actively convened key stakeholder groups, including a panel of advisors made up of people living with ALS, to provide input into a comprehensive plan that The Association will release in early November after approval from the Board of Trustees.
The bulk of The ALS Association’s initial $21.7 million commitment—$18.5 million—will advance four new cooperative alliances for the next one to three years involving research that has been identified as critical to finding new treatments for ALS: ALS Accelerated Therapeutics (ALS ACT), The New York Genome Center, the Neuro Collaborative, and Project MinE.These projects would not have been possible without Ice Bucket Challenge donations.
There will be synergies between these four initiatives that will increase the quantity, and most importantly, the value of data openly available to the ALS research community worldwide. The ALS Association will play a pivotal role in coordinating these efforts.
Under the leadership of The ALS Association’s Chief Scientist, Lucie Bruijn, Ph.D., M.B.A., The Association has been involved in the planning of each of these new collaborations, and, in each case, has sought the advice and evaluation of leading researchers to assess scientific merit, to gather additional ideas for each project, and to ensure the maximum relevance to future therapies.
