Discussion · Senate
Lisa Murkowski Republican
“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.”
“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.”
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.