Recognizing the 1960 University of Missouri Tigers Football Team

Floor Speech

BREAK IN TRANSCRIPT

Mr. COONS. Mr. President, one of the questions we all have to wrestle with in life is, Why do the innocent suffer? Why do the righteous find, at times, the circumstances of their lives to be so painful as to be beyond imagined? And how does one make purpose out of pain?

Of all the diseases that afflict mankind, ALS is one of the most cruel. It robs someone of their ability to speak, to walk, to move, to care for themselves, yet leaves them completely present and conscious.

Over the 16 years that I have served here in the U.S. Senate, I have been blessed by visit after visit from families going from office to office to ask not for themselves, not to lessen their pain or their suffering or their challenges but to try and turn their experience into a positive investment for others, lots of different families with lots of different challenges--mostly medical--sometimes the parents of children taken hostage in other countries or veterans who didn't get the benefits they were entitled to but often families whose loved ones or who they themselves are suffering with cancer, with Parkinson's, or with ALS.

Today, I am coming to the floor to celebrate a great and enduring friendship and partnership that has helped to make a difference in this dread disease. Through some of the visits to my office, I have gotten to know some amazing people: Craig and Kristen Colby of Delaware; Brian Wallach and Sandra Abrevaya; Dan Tate, whom I knew from college.

My engagement in trying to tackle the ravages of ALS began earlier. A dear friend from Newark, DE, Alex Snyder-Mackler--his father Scott lived with and then died from ALS; my chief of staff lost his father to ALS; and my brother lost his best friend. And now today, my best friend from growing up, Dr. Jack Flynn, is bravely living through what has been a tragic and difficult diagnosis and a steadily worsening condition.

When you meet someone with ALS, they are always accompanied by someone by their side who knows every detail, who helps them to eat, to talk, to live, to communicate. And they are looking for ways to make meaning out of their suffering.

Through all of this, I have had an incredible partner and advocate, a dear friend--the senior Senator from the State of Alaska, my colleague Senator Lisa Murkowski. We are the cochairs of the Senate ALS Caucus, and I am blessed to have her with me on the floor today as we announce the next step forward in our work together on ALS.

BREAK IN TRANSCRIPT

Mr. COONS. Mr. President, I thank my colleague and friend from the truly great State of Alaska.

Our mutual friend Dan Tate, long known here as an active lobbyist, who is living with ALS, has been texting the two of us about the impact that this research has had on him and his condition and on many others.

He most recently texted me:

NIH and FDA have done exceptional work.

The ACT for ALS bill that we helped get passed 5 years ago and that we are now reauthorizing--I will remind you that initially, advocates were seeking $10 million.

Do you remember the Ice Bucket Challenge of 2014? They were seeking $10 million in Federal medical research. This year, it was $115 million. In total over the years since we have passed this legislation through this Chamber, $391 million has been invested.

There are today 1,200 people living with ALS enrolled in a landmark genetic study, and there have been significant steps forward in experimental treatments.

Dr. Sabrina Paganoni of Mass General Brigham Neuroscience Institute said: We are at a turning point because we have a greater awareness of ALS, more funding for research than ever before, and more treatments in development than ever before.

When Lou Gehrig gave a speech announcing his retirement from baseball, he concluded by saying: I am the luckiest guy in the world. Many saw that as a bitter irony because he left an outstanding career in baseball to struggle and suffer through an ultimately terminal disease.

But I have to say that I am the luckiest man in the world to have the blessing of the great, enduring friendship of a colleague and partner from Alaska; of the steady and reliable and motivating input of so many advocates and cared-for people living with this dread disease; and the lifelong partnership and friendship of an amazing man, Dr. Jack Flynn.

In a determined effort to deliver hope and change, Senator Murkowski and I and all of us in this ALS Caucus are determined to get this bill to the President's desk, signed into law, and to deliver another generation of medical research to get us closer to that day when no one--no one--has to face the diagnosis or live with ALS and it will be a chapter in our history, not a threat for our future. But for today in this body, I am grateful for a chance to celebrate a significant step forward, a unanimous action by this Chamber, and the delivery of hope to so many around our Nation and our world.

BREAK IN TRANSCRIPT

Source