Congressional Daily Record
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September 29, 2026
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Download official Senate Record PDFReturn to issue contextMs. MURKOWSKI. Mr. President, since I am here on the floor and since I have my friend and partner who has worked with me on other matters of great import and impact, I want to take this opportunity to celebrate something that happened last evening when we here in the Senate passed the reauthorization of the ACT for ALS bill. This bill has passed the House, it has now passed the Senate, and it can head to the President for his signature.
The path on this one, again, should have been easy. It should have been easy, but it just hasn't been. It has taken years of work here in the Congress and even more years of work and effort and heartfelt effort from the ALS community, who are amazing men and women—the people who live with ALS and their families, their caregivers, the researchers, the advocates who share their stories and kept pushing us to keep moving this forward.
We passed the ACT for ALS in 2021. That was an enormous milestone, and, again, I appreciate my colleague here. But what it meant for those who have been diagnosed with ALS to know that for the first time, there would be this pathway for individuals who have an ALS diagnosis who are not eligible for clinical trials to be able to access these investigational treatments.
So we have made good progress. We pushed funding to NIH and to FDA so that we can accelerate the research and we can help move more of these promising treatments from the laboratory to the people who need them.
and I along with Representatives Calvert and Quigley, on this reauthorization—good, strong bipartisan progress in both the House and the Senate. We thought we were cooking. We are going to make this thing happen. We are going to get it across before the September 30 deadline. And then we were literally running out of time.
legislative process. There are times when slowing things down makes good sense, but when it comes to ALS, a slowdown, a lapse in authorization—this is not just a procedural issue; this is disruptive. It causes uncertainty. It causes so much anxiety for those who are already navigating such an unpredictable and such an uncertain disease.
research infrastructure and the treatment access pathways they are relying on are now going to disappear because a Federal authorization has expired. That is what this reauthorization does. It continues that continuity so that the work that has been built continues and it doesn't have to stop and restart, because ALS is progressive and not in a positive way. Every day, it is harder and harder. People living with ALS and their families cannot put their lives on hold while they are waiting for the next breakthrough because every single day matters.
these past 5 years. The ALS community has helped build this momentum, and it is through the research networks, it is through the collaborations, the new pathways.
been built. So it is not just about preserving a program; it is preserving the momentum, preserving the options, and preserving the hope because that is what these families are clinging to every day, is that when you are facing a disease that does not wait, that maybe today is going to be the day for that breakthrough.
I am so honored to work alongside my colleague Senator Coons. He could not be a better advocate. I am so honored to work with so many ALS advocates and the broader ALS community. We have more work to do. We still have to get the Justice for ALS Act and the ALS Better Care Act. We are going to do that. But I am so enormously grateful for the persistence we have shown, the heart that has been here, and, again, the success that was achieved here in the Congress, and now, moving forward, the hope that will continue with the families and those who live with ALS.
Mr. COONS. Mr. President, thank you to my dear friend the Senator from Alaska, Senator Murkowski, and to all the ALS advocates out there who have reached out to both of us—to us, to our families, to our staff, to our friends.
ALS is the cruelest disease I know. It slowly and steadily and relentlessly robs someone of their ability to control their muscles, to be themselves, to live their lives, to engage with their families, to carry out their careers, and to share their blessings with others around them. While they remain fully conscious and present, they lose their capacity to button their buttons, to drive a car, to speak, to do the things they were born and meant to do. It is an awful, terrible disease. It is colloquially known as Lou Gehrig's disease. We know people whose lives have been touched directly by it.
YouTube or TikTok sensations that seemed to me to be purely good in that it challenged people to douse themselves with ice water in order to raise the visibility of the urgency of investing in ALS research.
wife Sandra, who founded I AM ALS after Brian was diagnosed in 2017— someone who was a skilled and talented advocate and lobbyist and leader here in Washington who made purpose out of pain.
night, he began coming to the Hill, documenting in a daily way his struggles, his courage, his success in the face of ALS, and engaged both of us and got us to help launch the ALS Caucus here in the Senate.
I; Craig and Kristen Colby from Delaware, who have visited me year after year; my younger brother Steven's best friend; the father of Alex Snyder-Mackler, a talented lawyer I knew from Delaware; and, of course, my chief
of staff's father—have all lived with and ultimately died from ALS.
it affected us personally or deeply. But since we passed ACT for ALS, back in 2021, it has come closer to home.
was absent, because Dr. Jack Flynn is living with ALS. Yesterday, his grandson Liam was born. And it is a wonderful reminder that, even in the midst of struggle and tragedy, life goes on; that the blessing of birth and creation continues.
about what faith can mean in the face of adversity, Jack has shown better than anyone I have known what it means to be a good husband and father. So forgive me.
appropriations for $10 million—$10 million—for ALS research, to bring the hope that Senator Murkowski is talking about. This year, we got $115 million appropriated for ALS research.
Now, we often ask ourselves—at least I ask myself: What are we doing here? What are we getting done in the late night votes, in the endless partisan swirl, in the bickering and the fighting, outside and inside.
unremarked. But I cannot thank enough my friend and colleague Senator Murkowski for her tireless dedication to moving ACT for ALS for its reauthorization, as she just detailed.
done in the House and sent it to us. But there were small but important differences between the version in the Senate and version in the House.
good. And we locked arms and said, after lots of calls for support and help, that we were determined to get this passed and sent to the President's desk for his signature before we left for the next month, before it expired tomorrow, because at the end of the day, the urgency, the necessity of hope in the face of this dread disease, is the single biggest gift we can give to families living with ALS.
treatments, 1,200 people are enrolled in a landmark genetic study of the origins and causes of ALS, thousands of lives have been changed and made better, and tens of thousands of families have been given hope where previously there was none.
So, today, we can say that we have done it again because of you: $100 million a year is authorized for ALS research for the next 5 years.
can impose on good people the suffering of this disease, but I know that our calling is to offer hope in the face of that suffering, and to celebrate those who continue to live bravely with purpose and with love, even in the face of this dreaded disease.
I cannot thank you enough—all the advocates who reached out to us; the chair and ranking member of the HELP Committee, who helped make this possible; the staff who have supported Senator Murkowski and me in this work; and my dear friend Senator Murkowski from Alaska—for this day that is worthy of celebration.
Thank you.
The PRESIDING OFFICER. The Senator from Alaska.
Ms. MURKOWSKI. Mr. President, I am so honored to work alongside colleagues like my friend from Delaware, who has so much heart and so much passion. But it is a reminder to me of how much we have to do on behalf of those who do feel that they do not have a path forward, and they look to us in Congress as they go through some of the most difficult and dark moments as families together.
Like Senator Coons, I have been touched by ALS, and my family has. And, in fact, it was through my family that I came to this cause, and it is through my family that I will remain committed to this cause, until such time as we have a full treatment and a cure for this awful and dreaded disease.
lived with ALS for 8 years. And for 8 years, as a family, we came to understand the impact of the disease, but more than the impact, what it meant to live day by day, hoping—just hoping—that tomorrow was going to bring something that was more positive.
And so after Pat left us, my cousin Jenny stayed in the fight. It is pretty hard after you have fought alongside your spouse, and pretty hard when you have come to hate a disease so passionately, and you want to never utter those words, those letters, again.
It is done. It is not signed into law yet, but it is
happening.
And she sent a note back, late, late last night. And I am just going to share this as my final comments.
She said:
If there is one small blessing or one piece of my broken
heart that is healed because we were placed in this world, it
is knowing that other families will have access to drugs,
continued research and studies, so they can live longer and
we can end this disease. With a reauthorization of ACT for
ALS, we have hope and drugs. Pat would want it that way.
So, Mr. President, thank you. Thank you for helping us realize this today on behalf of all those who live with ALS and their families.
I yield the floor.
The PRESIDING OFFICER. The Senator from Nevada.
Anniversary of Route 91 Harvest Music Festival Shooting
Ms. ROSEN. Mr. President, I rise today ahead of the ninth anniversary of one of the darkest days Las Vegas has ever seen: the shocking tragedy of October 1, 2017, the largest mass shooting in American history.
gunman opened fire on the festival, killing innocent concert goers and leaving so many injured and traumatized.
the consequences of his actions remain with us for a lifetime. Fifty- eight innocent lives were taken on the night of October 1, and in the years since, we have lost two more individuals as a result of this horrific tragedy—families left without their loved ones, parents without children, children without parents.
firefighters, paramedics, and others who selflessly ran into the chaos and confusion of that night just to help. On this dark day, we saw our city come together like never before to support the victims.
stocks, which the 1 October gunman used to kill so many in just 10 minutes. Unfortunately, the Supreme Court has since overturned this commonsense ban, and the epidemic of gun violence in this country continues to persist to this very day. This year alone, the United States has seen more than 350—350—mass shootings.
We are not powerless here in Congress. We can do something about the relentless gun violence plaguing our communities. We can do something. As we honor the memories of the innocent individuals who were brutally murdered 9 years ago, we must also recommit ourselves to that action to ensure that no other community ever experiences a tragedy like this again. The cost is forever, and it is too deep. We must come together and pass the bipartisan bill I helped to introduce to ban bump stocks before another community lives through a day like 1 October.
together as a community and supporting one another. This is why we will always be Las Vegas strong. I am proud of our community. I am proud of our resilience. We will continue to fight against gun violence.
I yield the floor.
The PRESIDING OFFICER. The Senator from Utah.
Utah
Mr. CURTIS. Mr. President, when Utah's pioneers first arrived in the Salt Lake Valley, they had almost nothing. They had no reservoirs, no pipelines, no pumps, no Federal grants, and no municipal bonds. Their most sophisticated earth-moving equipment ate hay. What they did have was a problem. There was not enough water where they needed it, so they moved it.
of the advance company diverted City Creek to soften the dry ground and irrigate crops. Within a year, thousands of acres were under irrigation. As settlements grew, Utahns did not simply accept the limits of the streams flowing conveniently past them. They built ditches and canals. They diverted mountain streams. They constructed the Jordan and Salt Lake City Canal that stretched, roughly, 28 miles across the valley. Eventually, they developed water exchanges, providing farmers with water from Utah Lake and the Jordan River in exchange for higher quality canyon water that could serve a growing community.
There is something important in that history lesson for us today. These were people with picks, shovels, horses, and oxen. They had almost no capital; yet they were willing to undertake enormous projects because they understood that the limited water available to them at that moment did not have to define the territory's future. The pioneers were bold. They thought big.
We need some of that thinking again. Utah is growing. The West is getting more crowded. We are in a pattern of drought. The Colorado River is under extraordinary pressure, and the Great Salt Lake reminds us that every gallon has competing demands. Conservation has to be part of the answer. Agriculture needs to become increasingly efficient. Cities should reuse water and eliminate unnecessary consumption. We need to be better stewards of the water we already have. But I don't believe conservation alone is a long-term water strategy for a rapidly growing State.
the Great Salt Lake, and I challenged them to think like pioneers. What are the big ideas? What are the ideas that sound a little crazy today but that might not sound so crazy 50 years from now?
money and even engineering implementations off the table. Before telling me why something couldn't be done, I wanted to hear what might be possible. The list quickly became long. What about desalination plants? What about bringing water from wetter parts of the country? What about ground water beneath the Great Salt Lake? Can we recover water that is currently stranded from the lake? Can we reduce evaporation? Can we develop crops that produce more with less water? Can better forest management help more winter snow actually reach the ground? Some of these ideas may not work. Some will be too expensive. Others may fail because of engineering, environmental, or legal problems. That is fine, but we should know they don't work because we took them seriously enough to find out.
Utah has done big things before. The Central Utah Project moves Colorado River Basin water across the Wasatch Mountains through a remarkable system of reservoirs, tunnels, aqueducts, and pipelines. It took generations to conceive, finance, and build. Before that came the canals, and before the canals came a ditch from City Creek.
accomplished and romanticize it. We celebrate their courage, put their pictures in museums, and tell their stories every July. I wonder if one of the best ways to honor them is to simply think and act more like they did. Imagine telling a Utah pioneer that constructing a 28-mile canal with picks, shovels, and horse-drawn equipment was too ambitious. Imagine telling them the valley could support only as many people as the existing water streams happened to accommodate.
wanted their children to inherit. Our challenge is different, but I think our responsibility is much the same. None of this means we should build every project someone can draw on a map. We need good engineering, honest accounting, environmental responsibility, and respect for our neighboring States. We should conserve aggressively before spending enormous amounts of money to create or transport additional water, but we should not assume that today's water supply is all Utah will ever have.
combination of conservation, agricultural efficiency, reuse, watershed restoration, desalination, better storage, new technology, and perhaps, someday, bringing additional water into the Colorado River system. And there are probably good ideas we haven't thought of yet.
capital providers, universities, lawmakers, and technology companies. I would like to see more of us working on this problem. We need our best minds to help us figure out water. Most importantly, we need to think beyond the next legislative session or election cycle. Water projects can take decades. We ought to be thinking 50 and even 100 years ahead.
millions of people living along the Wasatch Front or a modern Utah economy built around technology, manufacturing, and innovation. Fortunately, they built more for Utah than they could see, and we should too.
thriving communities because they were willing to move water where it was needed. Nearly two centuries later, we have resources and technology they could not have even imagined. We could use a little more of their ambition and dreaming. When Utahns look back at us 100 years from now, I hope they will say that we didn't just manage the water problems we inherited but that we started building the solutions they need.
I yield the floor.
The PRESIDING OFFICER. The Senator from Oregon.