ALS Association
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Non-profit | |
Focus | advocacy and patient services |
---|---|
Location | |
Area served | United States |
President and CEO | Calaneet Balas |
Chairman | Scott Kauffman |
Revenue | $37 million (2019)[1] |
Website | als.org |
The ALS Association is an American
Research
The ALS Association has partnerships with Sean M. Healey & AMG Center for ALS at
Because of the awareness and funding from the
- NEK1[9] - mutations of this gene contribute to both sporadic and familial cases of ALS[9]
- KIF5A[10] - the KIF5A protein functions within neurons to transport materials up and down the axon, a nerve fibre that carries information to muscle cells and is also called the cytoskeleton;[11] the ALS mutation truncates the protein near its end so that the full protein is not made[11]
- C21orf2[12]
- TUBA4A[13] - mutations in this gene destabilize the microtubule network and diminish its repolymerization capability;[13] this is another cytoskeleton defect, like KIF5A[13]
- TBK1[14]
According to Hemali Phatnani, director of the Center for Genomics of Neurodegenerative Disease at the New York Genome Center, funds raised from the Challenge led to the creation of one of the largest resources of ALS whole genome-sequencing data, which has been shared with partners around the world.[15]
In September 2020, the
Public policy
After four years of efforts by thousands of people affected by ALS[19] to cultivate significant bipartisan support, the ALS Disability Access Act of 2019 was signed into law in December 2020. This bill eliminates the arbitrary five-month waiting period formerly required before people living with ALS could draw on their Social Security Disability Insurance benefits.[20]
The Ice Bucket Challenge
In the summer of 2014, the Ice Bucket Challenge raised $220 million after going viral on social media.[6][8][15] The ALS Association received $115 million of that amount. To participate, individuals were challenged to pour a bucket of ice water over themselves and/or donate money to ALS research and care. Individuals such as former President George W. Bush, Bill Gates, Taylor Swift, Benedict Cumberbatch, LeBron James, and Martha Stewart dumped ice water on their heads to raise money to fight ALS.[6][7][8] In total, about 17 million people uploaded videos of themselves doing the challenge, and the videos were viewed more than 10 billion times.[6]
From the challenge, $115 million was raised, and the Association increased the number of patients served by 28%.[8] Most of the donations were used for research, but there were other uses. For example, local chapters purchased equipment (power wheelchairs, walkers, shower benches, etc.) for ALS patients and were able to provide for everyone on their respective wait-lists.[21][22]
The Association's clinical network also expanded by 50% as a result of the funding from the Challenge.[7] A study by RTI International reported 29 new ALS Certified Treatment Centers of Excellence, 20 new Recognized Treatment Centers, and 7 new affiliated clinics.[23] Also according to RTI, the National Institutes of Health (NIH) has invested nearly $416 million in ALS Association-funded researchers since the Challenge.[15]
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.
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 in cities across the United States. Since its inception in 2000, this event has raised more than $265 million.[26]
References
- ^ "ALSA Form 990" (PDF). Retrieved 11 October 2019.
- ^ "5 Important Things the ALS Association Does". January 16, 2018.
- ^ "ALS Association Invests $3M in Platform Trial to Accelerate Development of Treatments". ALS News Today. 20 January 2020. Archived from the original on 6 February 2020. Retrieved 6 February 2020.
- ^ "The ALS Association, ALS Finding A Cure, and MDA Co-Fund Clinical Trial Grant to Study Restoring Immune System Function to Treat ALS". MDA. 9 August 2019.
- ^ "Our Partners". Target ALS. Archived from the original on 2018-02-17. Retrieved 2018-02-16.
- ^ a b c d e "5 years later, man with ALS who popularized Ice Bucket Challenge still inspires". Today. 19 July 2019. Retrieved 2019-11-06.
- ^ a b c d e Strub, Chris. "Ice Bucket Challenge Boosted ALS Association Annual Funding By 187%: Report". Forbes. Retrieved 2019-11-06.
- ^ a b c d "Cold Cash: What to Do When Unexpected Money Pours In". The Chronicle of Philanthropy. 2019-07-17. Retrieved 2019-11-12.
- ^ a b "ALS Ice Bucket Challenge fuels novel gene discovery". Medical News Today. 28 July 2016. Retrieved 2019-11-12.
- PMID 29566793.
- ^ a b "KIF5A gene associated with the development of ALS". Drug Target Review. Retrieved 2019-12-10.
- PMID 27455348.
- ^ PMID 25374358.
- PMID 28148298.
- ^ a b c "Ice Bucket Challenge Greatly Aided ALS Research, Study Reports". ALS News Today. 2019-06-10. Archived from the original on 2019-08-25. Retrieved 2019-12-12.
- PMID 32877582.
- ^ Belluck, Pam (September 2, 2020). "2 College Students Dreamed Up an A.L.S. Treatment. The Results Are In". The New York Times.
- ^ "Drug Combination Slows Progression Of ALS And Could Mark 'New Era' In Treatment". NPR.org.
- ^ "Congress passes ALS Disability Insurance Access Act, ending 5 month waiting period for patient benefits".
- ^ "President Signs S. 578". SSA.gov. December 28, 2020.
- ^ "The Ice Bucket Challenge and the promise — and the pitfalls — of viral charity". Vox. 20 July 2019.
- ^ "Ice bucket challenge: Where did the money go?". NBC News. 31 August 2019.
- ^ RTI International (May 2019). Evaluation of the ALS Association Grant Programs (PDF) (Report).
- ^ Ohlheiser, Abby (August 30, 2014). "ALS Association withdraws controversial applications to trademark 'ice bucket challenge'".
- ^ Court, Emma. "ALS patient group unhappy with how $115 million raised by the Ice Bucket Challenge is being spent". MarketWatch. Retrieved 2018-02-16.
- ^ "5 Important Things the ALS Association Does". ALS News Today. 16 January 2018. Archived from the original on 3 February 2020. Retrieved 3 February 2020.