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Road Map to a Cure
Advocacy Delivers

Veterans Benefits

Advanced historic regulations at the Department of Veterans Affairs that designate ALS as a service connected disease. Veterans with ALS and their survivors now have access to full health and disability benefits, regardless of where or when they served in the military and regardless of how soon after discharge they were diagnosed.

24-Month Medicare Waiver

Eliminated the 24-month waiting period that people disabled with ALS had to endure before they could start receiving Medicare benefits. ALS is now one of only two diseases for which the waiting period does not apply, and the waiver for ALS is the only change Congress has made to the waiting period since it was first established.

Presumptive Disability

Orchestrated Social Security rule change under which people with ALS automatically meet the medical eligibility requirements for SSDI and SSI payments. This ruling allows people with ALS to access their benefits months or even years sooner than before.
Generated more than $600 million for ALS research. Increased government funding from $15 million annually in 1998 to nearly $80 million in 2010.

National ALS Registry

Enacted the ALS Registry Act to establish the first nationwide ALS patient registry at the Centers for Disease Control and secured nearly $20 million for the registry which was fully implemented in October 2010 and may become the single largest ALS research project ever created.

Department of Defense Translational Research Funding

Partnered with Congress to appropriate over $25 million for the ALS Research Program (ALSRP) at the Department of Defense. The ALSRP is the only ALS specific program at DOD and is focused on translational research, leading to new treatments for the disease, which strikes veterans at approximately twice the rate as the general public. A total of over $25 million has been appropriated for the program in four years.
 

 



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