Groundbreaking New Report Stems from Advocacy
Effort to Rally Government Support of Making ALS Livable
ARLINGTON, Va., June 18,
2024 /PRNewswire/ -- The ALS Association
commends the National Academies for its groundbreaking new report
on amyotrophic lateral sclerosis (ALS). The report, the result
of an 18-month study, provides a comprehensive road map aimed at
making ALS a livable disease within a decade. This significant
milestone was driven by ALS advocates and the ALS Association,
including securing $1 million in
Congressional funding for the study.
"This new report is hugely important for the future of the fight
against ALS," said Calaneet Balas, president and CEO of the ALS
Association. "We still need to review and discuss each of the
individual recommendations in the report, but taken as a whole,
it's clear that there needs to be a significant investment in ALS
research and an overhaul of how ALS care is delivered and paid for.
Our community needs to unite around the best recommendations found
in the report and push policymakers and payers to take immediate
action on them."
At any one time, at least 30,000 people in the U.S. are living
with amyotrophic lateral sclerosis (ALS), a rapidly progressive,
fatal neurological disease. For unknown reasons, veterans are more
likely to develop ALS than non-veterans.
In 2022, Congress directed the National Institutes of Health to
commission a National Academies committee to recommend key actions
public, private, and nonprofit sectors should take to make ALS a
livable disease in the next 10 years. These guidelines will
inform policy decisions and drive strategic priorities, bringing
much-needed hope and support to the ALS community.
The ALS Association played a pivotal role in this initiative,
contributing recommendations, participating in interviews and
presentations, and providing expert insights throughout the study.
The ALS Association's involvement ensured that the needs and voices
of people living with ALS were central to the report's findings and
recommendations.
The last National Academies study on ALS, done in 2006, focused
on possible connections between ALS and military services. This
study resulted in the Veteran's Administration determination that
ALS was a service-related disease in 2008. As such, veterans with
ALS and their families are now eligible for an array of medical and
social service benefits.
"Our goal is to make ALS a livable disease until we can cure it,
and this report will serve as a vital road map to achieving that,"
said Balas. "We are committed to driving the most critical
recommendations forward and ensuring that people living with ALS
and their loved ones receive the care and support they need."
The National Academies report will be further presented in
detail at the ALS Association's inaugural ALS Nexus conference held
July 15-17 in Dallas, Texas. To register or for more
information visit alsnexus.org
Learn more about the report's recommendations and their
potential impact on the National Academies website.
About the ALS Association
The ALS Association is
the largest ALS organization in the world. The ALS 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 www.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, 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