Advocacy in Action


Every year, hundreds of advocates from across the country come together to talk about ways to advance public policies that will make ALS a livable disease while accelerating the search for a cure. But advocacy doesn't just happen once a year. It's an ongoing dialogue with public policymakers.

In fact, we re seeing advocacy in action right now. In recent weeks, more than 7,000 people have reached out to the FDA, imploring them to approve AMX0035 as quickly as possible. Late last week, the FDA announced that it was extending the time to review approval in light of additional data further showing that it is effective at reducing harms associated with the disease such as hospitalizations and tracheostomy.

While drug development is critical to making ALS a livable disease and ultimately finding a cure, our public policy priorities focus on the three main pillars of making ALS livable:

  • Find New Treatments and Cures
  • Optimize Current Treatments and Care
  • Prevent or Delay the Harms of ALS

That means fully funding the ACT for ALS, which was signed into law in December, expanding federal funding for ALS research and making sure the FDA acts with flexibility and urgency in approving drugs shown to be safe and effective.

It also means making sure the federal government ensures coverage of new ALS treatments, that federal and state governments support and fund programs to help people with ALS access specialized ALS care, and that lawmakers enact public policies that will positively impact the lives of people living with ALS.

You can learn more about all our public policy priorities here.

And sign up to join the 2022 advocacy conference at


Submitted by: Brian L. on Tue, 06/07/2022

Help in this fight please!!!

Submitted by: Christine M. on Wed, 06/08/2022

Dear leaders, my name is christine and my dad was diagnosed with ALS in July of 2021 and it’s a difficult situation like for all families facing this disease. I’m asking from the bottom of my heart, medicine or a cure but with quick and accurate results and research and approval. Life is so precious and valuable. Let’s end Als for good. -Christine

Submitted by: Rebecca I. on Mon, 07/11/2022

I appreciate all the ALS Foundation does firsthand from the 2&1/2 years
My husband suffered with PLS , a form of ALS till he died in December 2021.
I also would like to know who is studying the possible causes and prevention for this disease. Like, are
there records being kept of how many
people with AL S were exposed to Neuro toxins before getting sick ? Most doctors say there is no known cause.
But I'd like to see advocacy for this.

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