Global Phenomenon Raised Awareness and Advanced ALS Research, Care, and Advocacy
ARLINGTON, Va., May 1, 2024 /PRNewswire/ -- The ALS Association today celebrated the beginning of ALS Awareness Month and the 10th Anniversary of the Ice Bucket Challenge, which inspired the world to join the fight against ALS in the summer of 2014. Throughout May and the summer, the ALS Association will highlight stories of the people affected by ALS and point out the impacts made as a result of the $115 million the Association raised from the Ice Bucket Challenge.
"If I am going to have a disease like ALS, I want it to mean something and I want to be able to help as many people as I can to not have to fight like I have," said Shelby Kinsey who was recently diagnosed with a rare and aggressive form of ALS at just 22.
Shelby still has her voice and wants to use it for not just herself, but others like her. There are over 30,000 Americans living with ALS, which is always fatal, usually within two to five years.
"We are here fighting for Shelby and everyone living with ALS," said Calaneet Balas, president and CEO of the ALS Association. "Thanks to the Ice Bucket Challenge, we have been able to fund promising ALS research and expand access to high-quality care for people living with ALS, but we have a lot of work to do."
Balas added: "Throughout this summer we will celebrate the memory of the three young men who were at the heart of the Ice Bucket Challenge – Pete Frates, Pat Quinn, and Anthony Senerchia – and who inspired the world to care about ALS, a fatal disease that is physically, emotionally, and financially devastating. We also honor all those people we have lost since then because of this terrible disease. We must see this end."
The Ice Bucket Challenge raised over $115 million for the ALS Association in the summer of 2014. Since then:
- The ALS Association has committed over $154 million to support more 550 projects in the United States and 18 other countries. There are currently at least 50 promising treatments in the drug development pipeline.
- Two new treatments were approved by the FDA: Radicava in 2017 and Qalsody in 2023.
- The ALS Association has more than doubled its nationwide clinical network serving people with ALS in their communities, from supporting 100 Certified Treatment Centers of Excellence™, Recognized Treatment Centers™ and affiliated clinics before the Challenge to 226 today. This includes tripling its network of multidisciplinary clinics from 33 before the Challenge to 97 today. (Access to multidisciplinary care has been proven to increase length of life.)
- At least 12 new genes linked to ALS have been identified.
- Ice Bucket Challenge investments were transformative in funding one of the largest resources of ALS whole genome-sequencing data in the world, which has been shared with scientists around the globe and has led to the largest ALS sequencing study in the U.S.
- Advocacy efforts led to increasing the number of clinical trials, eliminated the two-year waiting period for people living with ALS to receive Medicare benefits, and secured significant statewide investments in ALS care and research.
- Annual National Institutes of Health spending on ALS research and development has increased from $56 million in 2013 to $167 million in 2023, a 3x increase.
In honor of the ALS Awareness month and all summer long, the ALS Association invites everyone to take part in the Ice Bucket Challenge to show solidarity with the ALS community, raise vital funds for research and patient care, and help pave the way for a future without ALS.
To get involved, simply follow these steps:
- Fill a bucket with ice-cold water or get creative and use an alternative like confetti or anything else.
- Record yourself dumping the bucket over your head.
- Share your video or photo on social media, using the hashtag #IceBucket10.
- Nominate friends, family, and colleagues to take on the challenge and spread awareness.
- If you like, make a donation on ALS.org or your favorite ALS charity.
For more information about how you can get involved, or how to participate in the Ice Bucket Challenge visit als.org/IBC or join the conversation on social media using #IceBucket10.
The ALS Association
The ALS Association is the largest philanthropic funder of ALS research in the world. The Association funds global research collaborations, assists people with ALS and their families through its nationwide network of care and certified clinical care centers, and advocates for better public policies for people with ALS. The ALS Association is working to make ALS a livable disease while urgently searching for new treatments and a cure. For more information about The ALS Association, visit our website at als.org.
About ALS
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. Over the course of the disease, people lose the ability to move, to speak, and eventually, to breathe. On average, it takes about a year before a final ALS diagnosis is made. The disease is always fatal, usually within five years of diagnosis. There is currently no cure.
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SOURCE The ALS Association
