The ALS Association

Advocacy

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Healthcare Reform
We stand ready to work with Congress to ensure all Americans have affordable access to the care they need.
Healthcare Reform
We stand ready to work with Congress to ensure all Americans have affordable access to the care they need.
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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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"Dear Colleague" Letters

A “Dear Colleague” letter is sent by a Member of Congress to their colleagues in the House or Senate. It asks for colleagues to “sign-on” to a letter either supporting an appropriations request or cosponsoring a piece of legislation. All “Dear Colleague” letters are important in terms of moving legislation forward. When a “Dear Colleague” Advocacy Action Alert is posted, all members of the ALS Community are asked to call their Representative or Senators to ask them to sign on.

Thanks to Congressional leaders and to the ALS Community for generating these recent “Dear Colleague” letters:

  • Department of Defense (DoD) ALS Research:
    More than 60 Representatives signed a “Dear Colleague” letter calling for $10 million in funding for the Department of Defense (DoD) ALS Research Program (ALSRP) for fiscal year 2018 (FY18). The letter was spearheaded by Rep. Dave Reichert (R-WA), Joe Courtney (D-CT) and Seth Moulton (D-MA). The letter was sent to Defense Appropriations Subcommittee Chairman Kay Granger (R-TX) and Ranking Member Peter Visclosky (D-IN).The DoD program is a collaborative effort that includes researchers from the VA, NIH and the private sector partnering together. Everyone who has ALS benefits from this research.
  • Centers for Disease Control and Prevention (CDC):
    More than 52 Representatives signed a “Dear Colleague” letter calling for $10 million for FY18 in funding for the ALS Registry at CDC. The letter was spearheaded by Rep. Eliot L. Engel (D-NY) and Peter T. King (R-NY) and sent to the House Appropriations Subcommittee for Labor, Health and Human Services chaired by Tom Cole (R-OK) and Ranking Member Rosa DeLauro Chair (D-CT). CDC’s National ALS Registry collects, manages, and analyzes data about people with ALS, connects patients with clinical trials and helps researchers to move forward in find a cure.

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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