Advocacy

2015 National ALS Advocacy Day & Public Policy Conference
Record numbers turned out this year to make a difference on Capitol Hill
2015 National ALS Advocacy Day & Public Policy Conference
Record numbers turned out this year to make a difference on Capitol Hill
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ALS advocates lead the fight to defeat ALS on the frontlines. You can lead us closer to a world without ALS by joining the dedicated network of ALS advocates nation-wide. As an ALS advocate, you can help change the laws and policies that affect thousands of people living with ALS and their families.

Take Action to Support People with ALS

Join the movement to find the cure for ALS! Learn about legislative priorities that greatly impact the quality of life of those living with the disease and the amount of funding available for research. You can make a tangible impact and bring us closer to the cure by lending your voice to the cause.

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Accelerating Drug Development

It costs $1-2 billion and can take up to 15 years to bring an effective ALS treatment to market. Through a strategic collaboration of research, patient care, and public policy initiatives, The ALS Association is working to accelerate development of new treatments and ensure access to them. People with ALS are at the core of our mission, and to that end we are working to speed up the drug development process with several critical programs.

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ALS Advocates Making a Difference!

  • Annual government funding for ALS research has increased from $15 million a year to over $80 million a year, including a total of more than $950 million since The Association created a Public Policy Department in 1998.
  • Eliminated the 24 month Medicare waiting period for people living with ALS, the only time the law has ever been changed since Medicare was created.
  • Social Security Administration issues presumptive disability regulations for ALS, making it easier for people with ALS to receive disability benefits
  • Helped to implement historic regulations at the Department of Veteran Affairs that designate ALS as a service connected disease, ensuring veterans living with ALS and survivors have access to VA benefits.
  • Led effort to enact the ALS Registry Act, which created the National ALS Registry and is the largest ALS research project ever created.
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