ACT for ALS Act

Floor Speech

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Mr. COONS. Mr. President, I rise today to join with my colleague the Senator from Alaska in celebrating some good news. Every now and then, something really good happens here in the Congress of the United States.

Many of us know the story of ALS, a particularly cruel and brutal disease, a disease that attacks the body but not the mind and whose victims, while they steadily lose their ability to control their muscles and their movement, suffer a sort of living death that, until you have seen it up close, it is hard to appreciate just how cruel this disease is.

Last week, 423 of our House colleagues, Members of the House of Representatives, voted to send the ACT for ALS Act here to this Senate. And last night, we here in the Senate unanimously sent that bill to President Biden's desk for his signature.

I have to start, I want to start by thanking my dear friend and colleague the Senator from Alaska. She has been a tireless, passionate, capable advocate, and without her this would not have happened. For those who question whether bipartisanship can still deliver results that matter, this Senator, this bill, this moment proves that it can and it does.

We are grateful to our lead cosponsors over in the House, Congressman Quigley and Congressman Fortenberry.

Frankly, the story behind this moment is the incredible advocacy of the ALS community. They are the reason that the bill got drafted, the bill got introduced, the bill got marked up, the bill passed the House, and that here in the Senate some obstructions were overcome with remarkable force and swiftness. I am just briefly going to mention the tenacity and the strength and the capability of some of the folks who have been my role models in this work, and then I am going to yield to my friend and colleague from Alaska, and she will also speak about it.

I just do also briefly want to say that ACT for ALS is not just some resolution. It is not just some commemorative act. This will deliver $100 million through a newly authorized FDA rare neurodegenerative disease grant program. It will fund critical research. It will improve coordination between the Federal, academic, and private sector researchers. And more than anything else, it will give people hope.

When I think of this work, Dan Tate is the man who first comes to mind, and Dan, like me, is a graduate of Amherst College and a spirited and capable and soulful person--one of Washington's most skilled lobbyists, someone who worked in the Clinton administration and worked for a Member of the House--and his personal advocacy has meant a huge amount to me, as has the engagement by Brian Wallach and so many others.

And I have a half dozen other folks of whom I want to speak, but, first, I think simple decency suggests I should yield the floor to my friend and colleague from Alaska.

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Mr. COONS. Point of personal clarification: Delaware.

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Mr. COONS. Born in Connecticut.

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Mr. COONS. I want to express my gratitude to my friend and colleague from Alaska.

It is, indeed, a deep well of darkness into which a family is cast when they receive a diagnosis of ALS.

My own awareness of this disease and its dread consequences is rooted in a number of cases that came to me and my extended family now quite a few years ago.

My brother is with us here in the Chamber today, and his dear friend Dan Loftus passed through ALS, and I remember the pain that this caused him and the depth of that loss.

A friend of mine from Delaware, Alex Snyder-Mackler, first shared with me his father Scott's diagnosis with ALS, now 20 years ago. And year after year, as many of us would gather in Newark and run a 5K and do a fundraiser for some sort of research, for some sort of hope, his father Scott slowly slipped away.

I talked to Alex this morning and was reminded of how much this means to those families who have come through this.

Max Walton, a dear friend of mine in the bar in Delaware, and his father--just an unbelievable character, a great and funny and creative and capable man who built a family business and then slipped from us through ALS.

ALS was first known to America when Lou Gehrig, an outstanding baseball player, got it. And he is still famous for his ``I am the luckiest man in the world'' speech, when he announced his retirement from baseball.

But 80 years later--80 years later--it is still a mystery to science and a death sentence to those who get this dread diagnosis who are often told they have just a few short years to live. This bill in their name and honor confronts this stark reality and makes progress.

I cannot close without thanking two other people--Meghan Taira, who is tireless here on the floor in helping move and prioritize things working for Leader Schumer, who lost her own mother, Ellen Taira, to ALS, and last, if I could, for someone whom I am not worthy of.

I have a legislative director, Brian Winseck, who is a spectacular human being, whose skill and persistence and diligence and dedication for my side of this kept us at it every day. His father Joseph was a high school civics teacher, and the loss of his life through ALS is something from which Brian has made so much good for others through his role in helping shepherd this through my office.

What Senator Murkowski and I are showing for a moment here today is an answer to a question so many families, so many people living with ALS, so many who have lost a loved one to ALS wonder in the dark moments: Does anyone care? Does anyone see this? Does anyone know what is happening? Is anyone going to do something about this?

The families and those who are living today with ALS and those who have lost someone to ALS need to know that your advocacy is heard, that it moved a mountain here in the Congress, and it will begin moving resources and energy and dedication.

We are at the beginning of the next step of this journey, but, as my dear friend, under whom I served many, many years ago in a very dark time in the history of South Africa, said: Hope. Hope is being able to see that despite all the darkness, there is still light.

Bishop Desmond Tutu spoke that to the people of South Africa struggling in a very dark time and place.

To the families, the survivors, and those who are living with ALS, my dear friend from Alaska and I and the folks in our families and on our staff and in the many countless teams of advocates around this country hope that this holiday season, that this Christmas, that this year, we have brought you some glimmer of the light that you have brought to us.

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