Our Suggestions for Strengthening the A.C.T. for ALS Bill to Help Even More People with ALS

We support the A.C.T. for ALS Act (H.R. 7071) and believe it should be strengthened by helping fund ALS research and by ensuring people with ALS in clinical trials can continue receiving treatments that may be helping them. We believe these steps will help improve its chances for passage and ensure it helps even more people with ALS. 

Here are our specific suggestions to improve the A.C.T. for ALS Act: 

  1. We propose adding an additional $200 million for research over four years. 
  2. We propose adding $200 million to fund open label extensions so that people with ALS who are in clinical trials can continue receiving experimental treatments that may be helping them. 
  3. We propose that the above two items be administered by the bill’s proposed “Center of Neurodegenerative Excellence,” which should be explicitly charged with finding treatments for people with ALS as quickly as possible. 

We thank Reps. Fortenberry (R-Ne.) and Quigley (D-Il.) for introducing the A.C.T. for ALS Act and we look forward to discussing these proposals with them. We also encourage you to support the Promising Pathway Act, introduced by Mike Braun (R-In.) in the Senate and Mike Quigley (D-Il.) in the House, and encourage you to contact your senators here to ask them to support it. We will be issuing an action alert for the House version later this week.