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Advocacy
Speaking out for those who have lost their voice...
Standing up for those who no longer can walk...
Fighting for those fighting ALS...
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The ALS Association provides people with ALS and their families an active and
strong voice in Washington, DC and State Capitals across the country. Through
outreach, education, and awareness, The ALS Association’s advocacy
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efforts are helping to create the roadmap that will lead to a treatment and cure for Lou Gehrig’s Disease.
Advocacy Delivers! Our advocacy accomplishments include:
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Enacting the ALS Registry Act to create the first nationwide ALS patient
registry at the Centers for Disease Control and Prevention and secured more than
$15 million to build the registry, which may become the single largest ALS
research project ever created. |
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Advancing historic regulations that establish ALS as a
service connected disease. Veterans with ALS and their
survivors now have access to more than $500 million in
benefits, including monthly disability compensation and
full health care.
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Securing more than $17 million in
Congressional appropriation to create
the ALS Research Program, the only
ALS-specific program at the Department
of Defense. The program is
specifically designed to find new treatments
for the disease, which strikes
military veterans at approximately
twice the rate as the general public.
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Enacting landmark legislation
to eliminate the 24-month
Medicare waiting period for
people with ALS, the ony time
Congress has amended this
law.
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Generating over $400 million in government
funding for ALS research over the past 10 years
and increased annual government funding from
just $15 million to more than $70 million.
Establishing a presumptive disability ruling for ALS at the Social Security
Administration, helping to ensure timely access to disability benefits for
people with ALS
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