Mr. Speaker, I thank my friend, Brett Guthrie, for his kind and generous words. It is very meaningful. Mr. Speaker, one of the first books that I recall reading as a child was about the life of the famous New York Yankees first baseman…
Mr. Speaker, I thank my friend, Brett Guthrie, for his kind and generous words. It is very meaningful.
Mr. Speaker, one of the first books that I recall reading as a child was about the life of the famous New York Yankees first baseman named Lou Gehrig. He was nicknamed The Iron Horse due to his athletic ability and endurance. He could hit. He could run. He could field. He was an amazing athlete. And then, everything just changed. Amyotrophic lateral sclerosis stole that man's abilities, causing him to lose control of basic functions.
This merciless, cruel, and aggressive neurodegenerative condition mocked Lou Gehrig's famous durability. The disease became known as Lou Gehrig's disease, and today we call it ALS.
Mr. Speaker, there was no cure then, and there is no cure now.
Before he died in 1941, at a ceremony at home plate in Yankee Stadium, Lou Gehrig had this to say. He said: ``For the past 2 weeks, you have been reading about a bad break. Yet today, I consider myself the luckiest man on the face of the Earth.''
That story, Mr. Speaker, Lou Gehrig's story, stayed with me as a child. I don't know why, but it did, and I remember it so well.
Now, fast-forward decades later. While serving here as a Member of Congress, this same cruel disease has swept upon my own family.
I want to do this, Mr. Speaker, if you will indulge me. Pictured here is my wife, Celeste, with her little brother and godson, Joe Gregory. In his mid-thirties, Joe began to notice that his hand was shaking. He started a battery of tests, but somehow, he just knew it was probably going to be the worst of the worst. He was diagnosed with ALS, but he faced his plight with both dignity and courage. He volunteered to be a part of an experimental trial. He said: Well, if it doesn't work for me, maybe it will help someone else.
He died when he was 37 years old, and he left behind Melanie, his wife, and four little children. On his tombstone are the words from the prophet Isaiah: ``Here I am; send me.''
Mr. Speaker, as Joe began to die, we as a family quickly learned about this profound trauma that affects so many families all across America. It happens over and over out of view. Most of us never see it.
I soon became acquainted with this amazingly strong and determined ALS community. It was so uplifting to me to meet people filled with so much hope. You have heard that word over and over today, Mr. Speaker, and it is appropriate. So many people filled with so much hope amidst their own suffering but who rightfully sought a different approach and a better way.
Out of this experience was born the ACT for ALS.
Mr. Speaker, for over 50 years now and over 50 clinical trials, ALS patients have submitted themselves to tests, trials, therapies, and placebos in accordance with the rules of the current healthcare policy framework. But progress has been uneven, even debatable, with serious impediments to promising new treatments. Many have sacrificed their lives to science as they weakened and died.
But today, here we are, Mr. Speaker, with over 330 cosponsors from both sides of the aisle, and we are standing for a new way.
ACT for ALS represents a monumental shift in the way in which we approach ALS and other neurodegenerative diseases. At the core of this bill, it does two things. It transforms the paradigm of disease research and regulation, and it creates a new pathway for promising treatments. It drives the hope. With this groundbreaking law, we can break through faster for those who have suffered so much.
I want to publicly say thank you to Representative Quigley for his tireless leadership in driving this hope, and my very close friends, Representatives Anna Eshoo and Cathy McMorris Rodgers, for their leadership in shepherding this bill as well. It is truly bipartisan. It was not easy, but here we are on the precipice of doing something good for so many people.
Mr. Speaker, I may be just a little bit like Lou Gehrig. I, too, am a lucky man, and for this reason: I have met so many beautiful people who have shared their sufferings, their vulnerability, and their gratitude toward this effort today. People of good heart, courageous, and who are fighters have created a family of solidarity to help us creatively rethink how to attack this disease through sound science, through technology, and through improved public policy.
Mr. Speaker, one last note: There are so many heroes who deserve special recognition, but you have heard one singled out today, and I want to single him out as well. This fight's Iron Horse is my friend and founder of the organization I AM ALS, Brian Wallach. As Brian said in congressional testimony in July with his wife, Sandra, there: ``This is our argument for our lives.''
Yes, it is, Brian.
So, Mr. Speaker, I should say publicly: Thank you, Brian; thank you, Joe; and thank you to the ALS community. We could not be here without you today.
