ALS Ice Bucket Challenge Year-End Update: Over $94 Million in Commitments Since 2014

In the summer of 2014, the ALS Ice Bucket Challenge inspired 17 million people to upload videos and raised $115 million for The ALS Association. Since then, The ALS Association has committed more than $94 million toward its mission, including over $82 million to fund research and helped forge nine new global research collaborations.

“The Ice Bucket Challenge was a global phenomenon, thanks to the generosity of millions of people, resulting in a tremendous amount of awareness of the disease and spurring a huge increase in our research spending,” said Calaneet Balas, president and CEO of The ALS Association. “Since 2014, we’ve committed over $82 million to fund diverse, cutting-edge research, including over 150 projects in the last year alone. By its nature and design, research requires time, and people with ALS don’t have a lot of time. But we’ve seen exciting breakthroughs from the research we fund – including some that were considered high-risk.”

ALS Ice Bucket Challenge donations have helped lead to the discovery of four new ALS genes, including NEK1, one of the most common. In addition, scientists who are a part of the Neuro Collaborative, which was started with an initial investment of $5 million from ALS Ice Bucket donations, have developed antisense drugs targeting two of the most common ALS genes, C9orf72 and SOD1. Our investment in this innovative technology also translates to other neurodegenerative diseases, making the impact of Ice Bucket donations even greater.

ALS Ice Bucket Challenge donations have also helped spur advancements in assistive technology to develop flexible, accessible devices to help people living with ALS better communicate to improve their quality of life. ALS Ice Bucket Challenge donations have also helped us increase the number of Certified and Recognized Treatment Centers of Excellence and the size of the grants to those centers. Prior to the Ice Bucket Challenge, we 34 Certified Treatment Centers of Excellence and there were no plans to increase that number. Today, we have 58 Certified centers, in addition to 20 Recognized Treatment Centers. (The primary difference between Certified and Recognized Treatment Centers is that Certified Centers conduct ALS research.)

To see our research accomplishments and highlights for the past year (2017), please click here. To see a specific list of all the projects and project descriptions we have funded since the Ice Bucket Challenge, please click here.

“We fight for treatments and a cure for ALS every single day,” Balas said. “We are the largest private funder of ALS research and are currently funding research projects in eight countries. We are also helping ensure people with ALS receive multidisciplinary care that we know enhances and extends life. And we’re amplifying the voices of more than 16,000 ALS advocates to push for better public policies that can help us fight for treatments and a cure.”

The ALS Association is committed to transparency in how donor dollars are fueling efforts to find treatments and a cure for the disease. And we’re committed to maximizing all donations from the ALS Ice Bucket Challenge and beyond.

The ALS Association Funds Five New Grants in the TREAT ALS™ Porfolio

March 2016

TREAT ALS™ Drug Development Contracts

Drug development contracts are milestone-driven awards designed to rapidly bring the most promising potential therapies closer to clinical trials. Many of the contracts are in partnership with industry. Academic-industry partnerships are invaluable to drive treatment approaches for ALS more rapidly to the clinic.

Continue reading The ALS Association Funds Five New Grants in the TREAT ALS™ Porfolio

The ALS Association Invests up to $2.5 Million for New Proposals to the TREAT ALS™ Drug Development Contract Grant Program

The ALS Association announced the Translational Research Advancing Therapy for ALS (TREAT ALS™) Drug Development Contract grant program to fund milestone-driven research to develop new treatments for ALS. This program supports research from early target identification to preclinical research and early pilot clinical trials. The successful grants with the most developed plan will receive up to a $500,000 investment over a maximum two-year period.

Continue reading The ALS Association Invests up to $2.5 Million for New Proposals to the TREAT ALS™ Drug Development Contract Grant Program

The ALS Association Announces $11.6 Million in New Research Grants to Find Treatments and a Cure for ALS

research news banner 2015Washington, D.C., (July 14, 2015) — Today, The ALS Association is pleased to announce its support of 58 new research grants totaling $11,621,638 to find treatments and a cure for amyotrophic lateral sclerosis (ALS).

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. For unknown reasons, veterans are twice as likely to develop ALS as the general population. There is no cure, and only one drug approved by the U.S. Food and Drug Administration (FDA) modestly extends survival.

“The global outpouring of support we witnessed during and after the ALS Ice Bucket Challenge has provided The Association with an unprecedented opportunity to advance ALS research on every front,” said Lucie Bruijn, Ph.D., M.B.A., Chief Scientist for The ALS Association. “These new awards represent some of the most promising research being conducted by the world’s top scientists and it is a great privilege to be able to direct donor dollars to support these incredible efforts.”

The ALS Association makes its research award decisions with the help of a number of Scientific Review Committees made up of individuals with expertise specific to the programs being considered to ensure the feasibility, novelty, relevance to ALS, and scientific merit of each project. The review committees recommend those projects appropriate for funding and final recommendations are approved by The ALS Association Board of Trustees. The Association received over 180 full applications for review.

The research awards announced include investigator-initiated grants, drug development contracts, Milton Safenowitz Postdoctoral Fellowships and support of the NEALS/TREAT ALS™ Clinical Trials Network. Descriptions can be found below and a full list with dollar amounts can be found here.

Investigator-Initiated Grants

Investigator-initiated grants draw on the knowledge of diverse experts throughout the world whose efforts are all dedicated to advancing the search for new ALS treatments. The ALS Association receives applications and focuses its funding on five key areas of research: genes, models and mechanisms, biomarkers, drug development, and clinical trials.

Drug Development Contracts

Drug development contracts are milestone-driven awards designed to rapidly bring the most promising potential therapies closer to clinical trials. Many of the contracts are in partnership with industry. Academic-industry partnerships are invaluable to drive ALS treatment approaches more rapidly to the clinic.

Milton Safenowitz Postdoctoral Fellowships

The Association offers The Milton Safenowitz Postdoctoral Fellowship for ALS Research Award. Founded by the Safenowitz family through the The ALS Association Greater New York Chapter in memory of Mr. Safenowitz, who died of ALS in 1998, these awards encourage and facilitate promising young scientists to enter the ALS field. Fellows work with a senior mentor and receive extensive exposure to the ALS research community through meetings and presentations.

NEALS/TREAT ALS™ Clinical Trials Network

The Association will continue to fund the NEALS/TREAT ALS™ Clinical Trials Network, a joint project with the Northeast ALS Consortium, a nationwide group of clinical researchers dedicated to advancing discovery and testing of new therapies for ALS.

The ALS Association has committed to spend $77 million on ALS research out of the $115 million donated through the 2014 ALS Ice Bucket Challenge. New projects and initiatives will be announced as soon as projects are reviewed and approved.