ALS Association

ALS Association
Abbreviation ALSA
Motto Create a world without ALS
Founded 1985 (1985)
Type Non-profit
Focus advocacy, patient services
Location
Area served
United States
President and CEO
 Calaneet Balas
Revenue
$33.4 million (2016)[1]
Staff
63
Website alsa.org

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.

Research

The ALS Association has committed around $67 million for ALS research since 1985.[2] ALSA is a research partner for Answer ALS (started by Steve Gleason),[3] Target ALS (founded by Dan Doctoroff),[4] and ALS ONE.[5] The organization also provides funding for the ALS Research Forum, a project of Prize4Life.[6]

Awareness and Fundraising

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.[7] Since its inception in 2000, this event has raised more than $220 million.[8]

Controversies

Following the 2014 Ice Bucket Challenge, the ALS Association attempted to trademark the term "ice bucket challenge". Following backlash, the association withdrew the trademark application.[9]

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.[10][11][12]

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.[13] In a blog post, the Association said that they don't and never have funded Phase III trials,[14] though, according to their website, they did in 2015 with Cytokinetics.[15]

References

  1. ↑ "ALS Association Financial Statement" (PDF). alsa.org. 2016.
  2. ↑ "Quick Facts About ALS & The ALS Association". ALSA.org. Retrieved 2018-02-16.
  3. ↑ "Partners - Answer ALS Foundation". Answer ALS Foundation. Retrieved 2018-02-16.
  4. ↑ "Target ALS | Our Partners". www.targetals.org. Retrieved 2018-02-16.
  5. ↑ Association, The ALS. "The ALS ONE Massachusetts ALS Partnership (MAP) Will Accelerate Treatment and Care in ALS". www.prnewswire.com. Retrieved 2018-02-16.
  6. ↑ "About Us". ALS Research Forum. Retrieved 2018-02-16.
  7. ↑ "Quick Facts About ALS & The ALS Association". 2012. Retrieved 2014-08-24.
  8. ↑ "Walk to Defeat ALS". 2014. Retrieved 2014-08-24.
  9. ↑ Ohlheiser, Abby (August 30, 2014). "ALS Association withdraws controversial applications to trademark 'ice bucket challenge'".
  10. ↑ "Phi Delta Theta To Announce New Strategic Direction In The Fight Against ALS – Phi Delta Theta Fraternity". www.phideltatheta.org. Retrieved 2018-02-16.
  11. ↑ "Phi Delta Theta Fraternity Launches The LiveLikeLou Foundation To Strengthen Impact On The Fight Against Lou Gehrig's Disease – Phi Delta Theta Fraternity". www.phideltatheta.org. Retrieved 2018-02-16.
  12. ↑ Briggs, Robert (2017-08-09). "PTD letter to ALSA".
  13. ↑ Court, Emma. "ALS patient group unhappy with how $115 million raised by the Ice Bucket Challenge is being spent". MarketWatch. Retrieved 2018-02-16.
  14. ↑ "An Open Letter to the ALS Community". The Official Blog of The ALS Association. 2018-02-07. Retrieved 2018-02-16.
  15. ↑ "Cytokinetics And The ALS Association Announce Partnership To Advance The Fight Against ALS". MarketWatch. Retrieved 2018-02-16.


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