Recognizing the 1960 University of Missouri Tigers Football Team

Floor Speech

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Ms. MURKOWSKI. Mr. President, we go through periods here in the U.S. Senate where there are frustrating issues that we deal with. There are hours of unknown as to what is going to happen. Are we going to be able to make something happen? Are we making a difference? And some days can be particularly discouraging.

We have a long way to go before this day is through, but to be here at the midpoint of this day and to be able to, as my colleague and friend from Delaware has stated, to be able to celebrate an accomplishment is a reminder that we do good here. And we don't do good on our own. It takes teamwork. It takes cooperation and collaboration. It takes advocacy. This is really what makes me just filled with a level of optimism and hope as we are talking about where we are at this moment for the ALS community.

The House passed the Accelerating Access to Critical Therapies for ALS Act. We call it ACT for ALS. They passed it a few weeks ago, and then the Senate was able to pass it in wrapup. Yes, that means it passed by unanimous consent here yesterday. We are now in the final step of reauthorizing a program that is making a real difference for people living with ALS.

I think it is so important to just take a step back and say ``What does that mean?'' because we have not found the cure, unfortunately, for ALS. This legislation is not about this magical treatment that has come to be. But what we were able to do working together now 5 years ago when we passed the ACT for ALS Act, we created this pathway for individuals. It is kind of a roadmap. We said: If you are not eligible to participate in clinical trials to access investigational treatments, there is another way here for you.

We provided some pretty important funding to NIH and to FDA to accelerate the research, to improve the data sharing, to help speed up the development of new therapies. But what really comes about with ACT for ALS is it gives people who are living with ALS the opportunity to try.

Just let me try something. It might not work, but let me try because right now, the diagnosis I am living with offers no hope.

So this is something that gives those living with ALS some hope. This is a program that works. So we passed it 5 years ago. What we have now done is a reauthorization that allows us to build on this progress that we have made to ensure that individuals that are living with ALS can continue to access these clinical trials and the programs that continue to meet the needs of the patients and the researchers.

Senator Coons has mentioned the advocacy. Those caregivers, those who stand with and are wrapping their arms and their hearts around their loved ones who are dealing with ALS--this is about hope for them as much as those who are living with this dread disease.

My friend has acknowledged the names of those he calls friends.

Dan Tate--I was able to receive a text message on passage of the reauthorization here saying, you know, ``Go dudes'' or something like that. I don't know that I am a dude, but I loved the enthusiasm he had.

Brian Wallach has been an extraordinary partner over the years. You mentioned Sandra Abrevaya. Absolutely.

Then there is my personal advocate, my cousin Jenny Dwyer. It was through Jenny's husband Pat that our family learned of ALS, as Pat lived with ALS for 8 years; and as a family, we came to not only understand the disease and the awful progression, but it allowed us to understand some of what families go through who live with the almost daily heartbreak as you are watching your loved one progress through this diagnosis.

So to the advocates: Know that your work matters. Know that your stories matter. Know that you have made a difference.

So we are pleased to be able to be at this place where we can move to finally get this reauthorization into law. We have to work things through the two bodies here and get it signed in.

There is more that we have to do. We are working on some good things as the cochairs of the ALS Caucus--the Justice for ALS Veterans Act, which is a really good one, and the ALS Better Care Act. Again, these address some of the challenges that face individuals with ALS as well as their families when they are trying to access the care and access the benefits after a loved one has passed.

We know that for those that are living with ALS, every day matters, every day is precious, and we cannot afford to lose momentum when promising therapies are being studied. I am reminded if not weekly, maybe daily sometimes that people are waiting. People are waiting, and they are counting on us to show up for them.

So to all those in the ALS community: Thank you for your advocacy. Thank you for your heart and your passion and your persistence but also your willingness to open your hearts and to share your stories so that we can also become motivated and tenacious on your behalf.

I am very grateful for my friend from Delaware. It is hard, as I hear stories of your dear friend and as he goes through these stages of this disease. And know that even though I have not met Jack, he is in my heart as well, as well as the many, many whom we are advocating for.

With that, I thank again not only Senator Coons but all Members here in the Senate that have joined us in this effort to end ALS.

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