The ALS Association

Ice Bucket Challenge Progress
Ryan Merclean
The ALS Association
(202) 465-8807



Collaborative Science to End ALS Continues with Answer ALS Research Project

Washington, D.C. (September 10, 2015) — The ALS Association applauds the announcement of a new research project of Answer ALS to further break down barriers through collaborative science with the ultimate goal of ending amyotrophic lateral sclerosis (ALS).

The Association is pleased to have contributed to the development of this initiative, and through generous donations from the ALS Ice Bucket Challenge, awarded funding to many of the partner organizations that have helped fortify the building blocks of this important initiative.

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.

Answer ALS involves Johns Hopkins University’s Robert Packard Center for ALS Research, Cedars-Sinai Medical Center’s Regenerative Medicine Institute and the Massachusetts General Hospital Neurological Clinical Research Institute, National Institute of Neurological Diseases and Stroke (NINDS) and The ALS Association and will combine big data and comprehensive biological analytics to discover the causes of ALS and develop therapies to treat it. The ALS Association will contribute funds for the sequencing of the samples generated and as the program evolves.

“We are pleased to have been a pivotal part of the development of this large initiative and The ALS Association will continue to partner with NINDS, The Packard Center for ALS Research, Team Gleason and ALS Finding a Cure to advance this research project,” commented Lucie Bruijn, Ph.D. MBA, Chief Scientist for The ALS Association.

Last fall, after the public contributed $115 million through the ALS Ice Bucket Challenge, The ALS Association made significant investments in support of this research project, including The New York Genome Center, Cedar Sinai Stem Cell and Motor Neuron Core Facility, The NEALS Biorepository and NeuroBANK. All these initiatives will contribute to work being done through Answer ALS.

Additionally, The ALS Association recently announced its partnership with Biogen, which will closely align with Answer ALS so all the data can contribute to further enhance the research with the ultimate goal of identifying new targets, advancing drug development, improving clinical trial design and more rapidly finding effective treatments in a better defined ALS population.

“We look forward to continued involvement in Answer ALS and to directing additional funding to continue the momentum of this important collaborative initiative,” continued Bruijn.

About The ALS Association
The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front.  By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.  For more information about The ALS Association, visit our website at

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