ALS is a death sentence. Most people diagnosed are given just 2–5 years to live—years where their body slowly shuts down, taking away their ability to move, speak, eat, and eventually breathe. There is no cure. And there is no time to wait.

My name is Mikey, and I am living with ALS. This disease is not something distant or abstract for me—it is my everyday reality. It is the slow loss of independence, of certainty, of the future I thought I would have. Like so many others, I am running out of time while the world continues to move at a normal pace.

In 2021, the Accelerating Access to Critical Therapies for ALS (ACT for ALS) Act was passed to change what life looks like after an ALS diagnosis. For the first time, this law created pathways for people living with ALS to access experimental treatments outside of traditional clinical trials, while also investing in critical research to accelerate the development of new therapies.

For many of us, this wasn’t just policy—it was hope.

Because the reality is, most ALS patients do not qualify for clinical trials. Without this act, many are left with no options at all. The ACT for ALS Act gave patients access to potential treatments that could extend life, improve quality of life, and contribute to the research needed to find real breakthroughs.

And it is already making a difference. Patients are gaining access to promising therapies. Researchers are moving faster. Real progress is being made toward treatments that could extend—and one day save—lives.

But now, all of that progress is at risk.

The ACT for ALS Act is set to expire in 2026. If it is not reauthorized, funding will disappear, research will slow, and expanded access programs will be at risk of shutting down. For a disease like ALS, where time is measured in months—not decades—losing momentum is not just a setback. It is devastating.

This is more than a policy. This is access to time. To hope. To the possibility of more moments with the people we love.

ALS doesn’t wait—and neither can we.

Reauthorizing the ACT for ALS Act means continuing life-changing research, protecting access to critical treatments, and refusing to abandon the ALS community at a moment when real breakthroughs are finally within reach.

Sign this petition and urge Congress to reauthorize the ACT for ALS Act before it’s too late. Lives depend on it.