ACT for ALS
Contact Your Representative and Senators About ACT for ALS
The Accelerating Access to Critical Therapies for ALS Act will make $75,000,000 available in FY 2021 and 2022 as part of a pilot to provide grants to support expanded access programs. It will bring treatments for rapidly progressing diseases for which effective therapies don’t already exist to patients beyond the ongoing clinical trial. The legislation will also establish a Center of Excellence for Neurodegenerative Diseases at the FDA to accelerate the development and approval of therapies for the coming tide of neurodegenerative diseases that will cause a health and economic crisis in the coming decades. The Center will be modeled after FDA’s Center of Excellence for Oncology that has driven forward many monumental discoveries in cancer research.
Media Contact: Theresa Garner, [email protected]
- Press release from the original cosponsors of the House and Senate bill
- Congressman Fortenberry’s press release released after the bill was reintroduced
- A joint statement from I AM ALS, the Muscular Dystrophy Association, and the ALS Association
- What is new in the reintroduction of the bill
- I AM ALS’ original press release when the bill was first introduced in the house
- House ALS Congressional Caucus supports ACT for ALS
- Congressman Fortenberry and Congressman Quigley introduce ACT for ALS
We will find cures for ALS. The only question is when. That answer depends on you.
Stay informed on I AM ALS’ progress and what you can do to help us make hope real.
Statement on Patient Access to Therapies
While we seek cures, we stand committed to people living with ALS today having a chance to access treatments that could slow disease progression and give them more time. We firmly believe that even one more person with access to an ALS treatment that might work for them is progress.
Lou Gehrig Day for MLB
After a group of advocates impacted by ALS banded together to honor Lou Gehrig and the ALS community and raise awareness for ALS, Major League Baseball announced a league-wide Lou Gehrig Day that will be held yearly on June 2nd.
The Road to Accessing Promising Treatments
As we said last week, I AM ALS will not stand for the status quo when that means tens of thousands of people are diagnosed with ALS and told there is nothing medicine can do. We also recognize that leadership doesn’t mean we have all of the answers. That’s why we spent the last week listening to the ALS community. Here is our proposed response, not to the outcome of a single trial but to everything we see happening in ALS research.