Als

Senators spoke on the floor about several unrelated topics. Lisa Murkowski (R) and Christopher Coons (D) marked Senate passage of a bill reauthorizing ALS research funding, described as $100 million a year for five years, to help patients access experimental treatments and support the search for a cure; both said more work remains, and Murkowski shared her family’s experience with ALS. Jacky Rosen (D) marked the anniversary of the 2017 Las Vegas mass shooting and asked Congress to pass her bill to ban bump stocks after the Supreme Court struck down the prior ban. John Curtis (R) spoke about water supplies in Utah, saying conservation alone will not meet future needs and asking for long-range planning on new water sources.Written by AI from the debate. Updated .

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5 statements

Lisa Murkowski, AK

Republican
“The Senate passed our bill to keep funding ALS research and treatments. This law helps patients try new medicines and keeps scientists working on cures. We must keep this work going without delay, and we still need to pass two more bills to help ALS patients.”
Official Congressional Record

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. So we have been working with our partners in the House, Senator Coons 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. I think my colleague and I would both agree we respect the 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. Families should simply not have to wonder about whether or not the 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. So what this is about is to see the momentum that has been built over 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. But this reauthorization is about protecting the momentum that has 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. With that, I yield to my colleague and partner in all of this, Senator Coons.

Christopher A. Coons, DE

Democrat
“Congress just passed a bill to keep funding ALS research for five years, at 100 million dollars a year. ALS is a terrible disease that takes away a person's ability to move and speak. This money helps patients try new treatments and helps scientists look for a cure. I will work to make sure we actually provide this funding.”
Official Congressional Record

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. I think all of us remember the Ice Bucket Challenge--one of the first 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. I know Senator Murkowski and I are grateful for Brian Wallach and his 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. And, as have so many others with ALS, refusing to go quietly into the 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. Dear friends of mine--Dan Tate, who went to Amherst College, as did 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. When Senator Murkowski and I first got engaged in this, it was before it affected us personally or deeply. But since we passed ACT for ALS, back in 2021, it has come closer to home. I recently went to my high school reunion, and my very best friend 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. And I just have to say, of all the people who have witnessed to me 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. When we first began, advocates were asking us if we could find 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. We, frankly, get a lot of good done here, and often that good goes 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. Our partners, Congressman Calvert and Congressman Quigley, got it 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. Our challenge here is to not let the perfect be the enemy of the 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. This year, 700 people have gained access to experimental NIH 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. And as senior appropriators, I suspect we can commit that we will do everything in our power to ensure those funds are actually delivered. This is a small but real bipartisan miracle of partnership, of effort, and of investment in hope. At the end of the day, I struggle with understanding how a just God 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.

Lisa Murkowski, AK

Republican

Linked statement

“The Senate passed a bill to renew funding for ALS research and care. My cousin's husband died from ALS, and my family worked hard for this. I will keep working until we find a cure.”
Official Congressional Record

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. It was my cousin’s sister, as I call her--it was her husband Pat, who 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. But when ACT for ALS reauthorization passed last night by voice vote, I sent a text to Jenny. And I said: And she sent a note back, late, late last night. And I am just going to share this as my final comments. She said: 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.

Jacky Rosen, NV

Democrat
“Nine years ago, a shooter in Las Vegas used bump stocks to kill 58 people. The Supreme Court recently struck down a ban on bump stocks. I want Congress to pass my bipartisan bill to ban them again and stop gun violence.”
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Official Congressional Record

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. Like many Las Vegas evenings, tens of thousands of visitors came to the Las Vegas Strip for a concert, the Route 91 Harvest Music Festival. It was a beautiful night out. I was home in Las Vegas. And in the midst of the music, the dancing, and the fun, a deranged gunman opened fire on the festival, killing innocent concert goers and leaving so many injured and traumatized. It only took 10 minutes for him to carry out this brutal attack, but 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. We owe an endless debt of gratitude to those brave police officers, 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. In the wake of the shooting, President Trump instituted a ban on bump 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. Las Vegas has shown that we can survive the darkest days by coming 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.

John R. Curtis, UT

Republican
“Utah is growing, and we are facing a serious drought. Saving water is important, but saving water alone will not be enough for our future. We need to think big, just like Utah's early pioneers did. I want our leaders and experts to plan 50 to 100 years ahead and look into bold ideas to bring new water to our state.”
Official Congressional Record

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. Even before Brigham Young entered the valley in July of 1847, members 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. We should also be asking: Where is the next water, and how do we get it? I recently met with a group of experts who were working on water in 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? For purposes of the discussion, I asked them to temporarily take 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. We have a tendency to look back at what the pioneers did and 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. They looked at what Utah had and started building the Utah they 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. The answer probably isn’t one enormous project but, more likely, a 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. Utah has an extraordinary collection of engineers, entrepreneurs, 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. The pioneers who diverted City Creek in 1847 could not have imagined 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. Our ancestors came to one of the driest places in America and built 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.

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