[Congressional Record Volume 167, Number 218 (Friday, December 17, 2021)]
[Senate]
[Pages S9280-S9281]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]



                            ACT for ALS Act

  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.
  The PRESIDING OFFICER. The Senator from Alaska.
  Ms. MURKOWSKI. Mr. President, as my friend from Connecticut has 
pointed out, there are----
  Mr. COONS. Point of personal clarification: Delaware.
  Ms. MURKOWSKI. Oh, my goodness, my soul.
  Mr. President, may I strike that erroneous introduction?
  Mr. COONS. Born in Connecticut.
  Ms. MURKOWSKI. I thank my dear friend from Delaware--always 
Delaware--but truly a friend; a friend on many different issues, but a 
man whom I have come to know is motivated not by the politics of what 
goes on in this body but by the passion and his interest in doing good, 
doing good policy and doing good things for people.
  And what we are speaking to today, recognizing the significant 
passage of the ACT for ALS Act that happened last evening unanimously, 
as he has pointed out, that this is not only good for the body, if you 
will, to say we were able to move good legislation forward, good policy 
legislation forward, but this is a gift. This is a gift of hope for 
those who live with ALS, for those families who are part of that 
journey of those who live with ALS.
  ALS, as Senator Coons has noted, is an awful, awful disease. Some 
would suggest, and I certainly would, that it is probably the worst 
disease to be afflicted with, when your body literally closes in on you 
while your mind is still active and vibrant.
  I have a very personal connection to ALS. I think many of us have 
very personal connections to ALS. I wish that we didn't have these 
personal connections to this hideous disease, but we do, and that 
connection allows us to learn and understand a little bit more about 
it.
  And I think the most heartbreaking thing that I realized, when my 
family member was diagnosed with ALS, my cousin's husband, was that 
there was no treatment. There was no hope. There was no hope.
  I am not suggesting that the ACT for ALS is the end-all be-all. I 
wish that we could stand here and say that. It is not, but what it is, 
is a glimmer of hope.
  I want to read just a couple sentences from an email that I received 
last evening when I was able to share this good news that this bill was 
passing unanimously through this body, and my cousin Jen says:

       The passage of this bill will bring real, tangible hope to 
     people living with ALS and those to be diagnosed. In this ALS 
     world, right now, there are no effective treatments. All we 
     have is hope. This bill changes everything. It will bring 
     real, tangible hope and treatments to people living with ALS. 
     We have never had that in this disease.

  We haven't found the cure, we haven't found the treatment, but what 
we are providing today is that first step forward, a tangible step 
forward to the hope, because every day--every day--those who are living 
with ALS and their loved ones, who live through this disease with them, 
have to hope and pray every single day that today is going to be the 
day. Today is going to be the day that we can slow this, that we can 
halt this.
  There are some extraordinary heroes that have been involved with this 
fight over the years. They are everyday people. They got into it not 
because they were paid lobbyists. Most of them got into it because they 
had lived through ALS. They had lost a loved one to this disease, and 
rather than to give up and give in and be too tired to carry on, they 
said: I am going to commit so that no other families have to feel this 
helplessness.
  And so you have got some amazing people. You have got a group out 
there, the I AM ALS team--extraordinary, extraordinary advocates.
  Senator Coons has mentioned Brian Wallach and Dan Tate. The two of 
them lead I AM ALS. You have got Megan Miller, Deb Paust, Sandy Morris, 
Christa Thompson, Nicole Cimbura, Becky Mourey, Michael Lecker, Shelly 
Hoover, Michelle Lorenz, Mayuri and Mayank Saxena--so many, so many 
more who were part of that effort.
  The I AM ALS organization, working with the ALS Association, working 
with the Muscular Dystrophy Association and so many others were so 
critical in moving this forward. Think about what happened.
  This was introduced over here in the Senate. We looked this up. It 
was May 25. May 25. And to get over 60 cosponsors in the U.S. Senate on 
any kind of a measure--I wish that the Senator from Delaware and I 
could say that we single-handedly got every single one of those 
cosponsors, but it was these advocates. It was these grassroots 
individuals. It was everybody that I just named--Dan and Megan and 
Jenny and Deb and Sandy, who made these calls, who were relentless.
  And when the politics did intervene, they were unleashed and 
passionate in their advocacy. And I think this is a good lesson to us, 
that when those who are intimately and passionately involved, that you 
can make a difference, you can move legislation. You can move 
mountains.
  The last thing I want to say before I turn back to my colleague here 
is that there are a lot of people who are not part of an organization 
but who have just felt compelled to speak up.
  We heard voices from around my State: Marcel from Sitka; Douglas from 
Anchorage; a gentleman by the name of Mike, also from Anchorage. The 
calls, the letters, the emails that we got--I know all of our 
colleagues received the same as well.
  So this, again, was an effort that was so personal to so many, but 
the leadership that I think we saw come together with Brian Wallach, 
his wife Sandra--

[[Page S9281]]

they were the founders there of I AM ALS.
  Brian was only 37 years old when he was diagnosed with ALS--37--so 
super young. And he was told 6 months: You have got 6 months to live.
  He is a father to two little girls, and he just said: Got to keep 
fighting. We have got to keep fighting for a cure--a cure that will 
allow him to raise his daughters with his wife.
  And I think it is fair to say that, 4 years later now, Brian is just 
as determined, just as tireless an advocate for ALS and the ALS 
community.
  So, again, I think about people like Brian and Dan, my cousin Jenny, 
who lost Pat to this awful disease in 2013. He lived with ALS for 8 
years. Our family lived with ALS for those 8 years.
  And so the advocacy continues because of the passion for so many who 
have lived through a life that is almost difficult for us to imagine.
  And as they have come out of losing a loved one to a disease like 
this, to know that they are willing to carry that flag, that they are 
willing to commit their time, their resources, and everything that they 
have so that others don't go through this, we honor them. We honor that 
commitment.
  I am so pleased to be able to work with my partner on this and to 
know that this was a good success, but we are going to need to be doing 
more, and I will be doing it with him.
  I yield to my friend from Delaware.
  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.
  With that, I yield the floor.
  I suggest the absence of a quorum.
  The PRESIDING OFFICER. The clerk will call the roll.
  The senior assistant legislative clerk proceeded to call the roll.
  Ms. MURKOWSKI. Mr. President, I ask unanimous consent that the order 
for the quorum call be rescinded.
  The PRESIDING OFFICER. Without objection, it is so ordered.