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