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The ALS Association is an American nonprofit organization that raises money for research and patient services, promotes awareness about and advocates in state and federal government on issues related to amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. The ALS Association is broken up into distinct chapters each servicing a particular geographic area of the United States all working under the umbrella of a national charter and administrator.
|Motto||Create a world without ALS|
|Focus||advocacy, patient services|
President and CEO
|$29.7 million (2018)|
The ALS Association has committed around $67 million for ALS research since it was founded in 1985. ALSA is a research partner for Answer ALS (started by Steve Gleason), Target ALS (founded by Dan Doctoroff), and ALS ONE. The organization also provides funding for the ALS Research Forum, a project of Prize4Life, which has since merged with the ALS Association.
Awareness and FundraisingEdit
The association's signature fundraising event each year is the "Walk to Defeat ALS". This event is held each fall through spring by local chapters of the association in cities across the United States. Since its inception in 2000, this event has raised more than $220 million.
In August 2017, Phi Delta Theta, the fraternity of which Lou Gehrig was a member of, terminated its partnership with ALSA citing a lack of changes and improvement in organizational leadership, and elected to proceed with creating their own ALS-related charity.
In early 2018, a patient group called the "Terminally Persistent" coalition criticized the ALS Association for not spending the $115 million earned from the Ice Bucket Challenge more readily on research. Additionally, the group complained that the organization was not funding Phase III clinical trials for Brainstorm Cell Therapeutics, a pharmaceutical company researching treatments for ALS. In a blog post, the Association said that they don't and never have funded Phase III trials, though, according to their website, they did in 2015 with Cytokinetics.
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