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Thanks to Ice Bucket Donations ALS Association Triples Spending on Research

  • Date: 2014/11/01 (Rev. 2016/09/24)
  • The ALS Association - www.alsa.org
  • Synopsis : ALS Association announce long-term strategy for leveraging Ice Bucket Challenge donations to treat and cure ALS through global research, care services and public policy.

Main Document

The ALS Association announced on Thursday that the Board of Trustees has met and developed a long-term strategy for leveraging the Ice Bucket Challenge donations it has received to advance its integrated mission of leading the fight to treat and cure ALS through global research, care services and public policy. This will result in The Association tripling the amount of money it spends on amyotrophic lateral sclerosis (ALS) research to ensure the most promising research continues to be funded. It will also result in greater support to The Association's Certified Treatment Centers of Excellence, which provide evidence-based, multi-disciplinary ALS care and services in a supportive atmosphere with an emphasis on hope and quality of life.

ALS, also known as Lou Gehrig's Disease, is a progressive neurodegenerative disease that affects neurons (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. There is no cure and no life-prolonging treatments for the disease.

"We are thrilled with the additional funding for research and care services that the Ice Bucket Challenge has provided, even more important is the chance the entire ALS community now has to leverage our good fortune to work together toward our common goal of defeating this horrific disease," said Bill Thoet, Chairman of the Board of Trustees of The ALS Association. "Together, we now have the unique opportunity to fundamentally change the nature of this fight."

The Association's Board of Trustees, staff, chapter representatives and advisers met in Denver on October 17-18 to review and incorporate the feedback they had received from key stakeholders, including people living with ALS and their families, over the last two months.

"Thanks to the Ice Bucket Challenge, we are able to continue to improve the most comprehensive pipeline for ALS treatments in the world," said Barbara Newhouse, President and CEO of The ALS Association. "We now have tremendous momentum in the search for a cure. Our integrated mission, combined with increased collaboration, is accelerating our ability to move potential treatments through the drug development process and improve the support for people living with ALS at our care centers."

The Certified Treatment Centers of Excellence provide a comprehensive, multidisciplinary team approach to care that has been proven to both extend and improve the quality of life for those living with ALS. In addition, the Centers actively participate in ALS-related research.

Earlier this month, The ALS Association announced it was supporting six different programs and initiatives designed to expedite the search for treatments and a cure for ALS. Four of these projects involve global research cooperative alliances that would not have moved forward without the funding from The ALS Association and the matching donations it received.

In addition, the Association launched a new collaborative initiative that will bring the ALS community together to establish an ALS drug development guidance document. No such document exists today, which creates uncertainty and risk for what already is a difficult, lengthy and costly process. This initiative will incentivize ALS drug development, reduce obstacles and provide new opportunities to accelerate research and bring new treatments from the bench to the bedside.

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 www.alsa.org

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