The Act for ALS: A Call for Humanity in Healthcare

Hello, everyone!

My name is Wilbert Greenfield, and I’m 54 years young. I sit before you today not just as a person, but as a testament to the strength of the human spirit—and to the urgent, undeniable need for change.

For over 35 years, I’ve been a proud resident of Washington, D.C.—a city of dreams, promise, and power. But today, I stand here to make sure that promise includes people like me… people living with a fatal, incurable disease.

In 2006, at just 34 years old, my life changed forever. I was diagnosed with ALS—also known as Lou Gehrig’s Disease. It’s a relentless disease. It takes your muscles, your independence, your voice—but it does not take your will to fight.

As ALS progressed, I made a profound choice: I chose to live. I chose to get a tracheotomy. I chose life support. I chose to breathe. I chose to stay here—to keep fighting, not just for myself, but for everyone living with this disease.

And through that journey, I’ve seen the best and worst of our healthcare system.  I spent five years in a nursing home—two of those years during the height of COVID. I witnessed loss, fear, and a system stretched far beyond its limits. Facilities weren’t equipped for complex conditions like ALS. Imagine two or three nurses responsible for forty patients—many on life support. At night, call bells rang unanswered. There were times I struggled to breathe for hours… unsure if help would come.

That’s not care. That’s a system in crisis.

I fought my way back into the community. Back into life. Back into purpose.

And today, I’m still here—advocating, serving, and giving everything I have to this fight.

But let me tell you something clearly: Surviving ALS is not enough. We need a cure. That’s why today, my fight—our fight—is for something that gives real hope:

The ACT for ALS

The ACT for ALS, passed in 2021 with strong bipartisan support, is one of the most important pieces of legislation in the history of this disease. In just a few short years, it has transformed what’s possible.  It has created access where there was none. It has funded research where there were gaps. It has given hope where there was only waiting.

Because of the ACT for ALS:

• Hundreds of patients now have access to promising treatments through Expanded Access Programs—programs designed for the 80–90% of ALS patients who don’t qualify for clinical trials.

• More than 750 people living with ALS have already received access to these potential therapies.

• Researchers are collecting critical data from patients like me—people who were previously excluded from studies, especially those of us more than two years past diagnosis.

• That data is helping the FDA and insurers understand how treatments work across all ALS patients, not just the newly diagnosed.

And it doesn’t stop there.

The ACT for ALS has built something we’ve never had before—a coordinated national research ecosystem:

• Programs like ALL ALS are helping scientists understand the natural history of this disease.

• Partnerships like AMP ALS and Critical Path Institute’s C-Path for Rare Neurodegenerative Diseases are accelerating drug development.

• Data platforms are allowing researchers to share information and biological samples faster than ever before.

This is how cures happen. This is how we move from surviving… to living. This is how we turn ALS from a death sentence into a treatable disease.

But here’s the truth we cannot ignore:

The ACT for ALS must be reauthorized in 2026—or we lose all of this progress.

Everything we’ve built… every door that’s been opened… every ounce of hope… is at risk.

So I’m sitting here today, not just as a patient—but as a voice. A voice for those who can no longer speak. A voice for those who are newly diagnosed and terrified. A voice for those who won’t make it to see the cure—unless we act now. I am still here because I chose to fight. And today, I’m asking you—our leaders, our communities, our nation—to fight with me.

Fund the ACT for ALS.

Reauthorize it.

Protect it.

Expand it.

Because this isn’t just about research.

It’s about time.

Time that people like me don’t have.

Every day matters.

Every moment matters.

Every breath matters.

I’ve dedicated my life to giving back—to serving on commissions, advocating for change, and lifting up the ALS community. But the greatest gift we can give… is a future without ALS.

America, this is our moment.

Let’s not turn away.

Let’s not slow down.

Let’s not fail the people who are counting on us.

My life depends on it.

Our lives depend on it.

Let’s fight—not just to live—but to end ALS.

Thank you.

Wilbert Greenfield II

A man fighting for hope, healthcare, and a happier loving world for all mankind.