“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.”
“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.”
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.
