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Floor Speech
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Ms. MURKOWSKI. Mr. President, as my friend from Connecticut has pointed out, there are----
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Ms. MURKOWSKI. Oh, my goodness, my soul.
Mr. President, may I strike that erroneous introduction?
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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-- 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.
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