Stephen Michael Gleason Congressional Gold Medal Act

Floor Speech

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Mr. CASSIDY. Mr. President, I am here to speak about honoring Steve Gleason with the Congressional Gold Medal.

Steve is well known in Louisiana and throughout the gulf coast and to football fans across the country. He is a Washington State native, as Senator Murray recently spoke, but he lives in New Orleans with his wife Michel and son Rivers.

Steve played in the NFL for 8 seasons, mostly with the New Orleans Saints. He is famous as a New Orleans Saint. On September 25, 2006, on ``Monday Night Football,'' the first game back in the Superdome when it reopened after Hurricane Katrina, the Saints were playing their archrival and division opponent, the hated Atlanta Falcons. The Presiding Officer probably likes the Falcons.

The Falcons were punting from deep in their own territory. Steve broke through the line and blocked the punt. Fellow Saint Curtis Deloatch recovered the ball for a touchdown.

The stadium erupted. There were 70,000 fans in the Superdome stadium. I was watching on TV. Al Michaels was blown away. It was an incredible moment, not just for the football team but because it was the first game in the Superdome, having just been reopened after Hurricane Katrina, which had almost destroyed the city and, indeed, the whole gulf coast, and it had much more meaning.

The emotion was for the play but also for what the play symbolized for the game. Steve Gleason's blocked punt symbolized, as Steve would say, ``no white flags.'' New Orleans and the gulf coast were back, and despite Katrina's devastation, we would not surrender.

Now Steve demonstrates that ``no white flags'' resolve in another arena. In 2011, Steve was diagnosed with amyotrophic lateral sclerosis, also called Lou Gehrig's disease. He cannot speak and, except for moving his eyes and blinking, he cannot move. But Steve can still think, and because he can think and because of what he has done with his thoughts is why he inspires and why we wish to honor him with a Congressional Gold Medal.

He has a difficult challenge, but his accomplishments addressing that challenge are what is noteworthy. After his diagnosis, Steve and his wife began a mission to show that patients with diseases such as ALS cannot only live, but they can thrive.

Steve declared that there would be ``no white flags,'' and that became the mantra of something he began: the Gleason Initiative Foundation. This foundation helps to provide individuals who have neuromuscular disease or other injuries with cutting-edge technology, equipment, and services. It raises global awareness about ALS to find solutions and an end to the disease. It has also helped hundreds of people with ALS experience life adventures they never thought possible.

Steve's story and mission have been chronicled by national and local media outlets as well as a 2016 documentary, ``Gleason,'' which shows what his life has been like since 2011.

When first meeting Steve, you would expect to feel pity. Yet, as you walk in and meet him and see what he has done, as he speaks to you through the machines he has helped to develop, you feel inspired. His perseverance and commitment to giving hope to others is amazing.

I will give a partial list of what he and his wife have done since his diagnosis. He founded the Gleason Initiative Foundation, of which I just spoke. Steve, in partnership with Microsoft,--and I have a poster here showing Steve and the Microsoft team--developed eye-tracking technology that allows him to communicate and to move.

So as Steve looks up--again, he can only move his eyes and blink his eyes--he can look at this keyboard and if it says, ``Turn my wheelchair to the right,'' he looks there and blinks his eyes and his wheelchair will turn to the right.

He has prerecorded statements. So if you walk in, he will blink at a prerecorded statement that says: ``Hello. My name is Steve Gleason. How are you?''

If he wishes to say something spontaneously, he can blink, blink, blink, and it will say: ``Well, let's discuss this further.''

It is not all just ``let's talk business.'' He has his iTunes on there. He can blink and get his favorite song. There is a multiplicity of functions that allow the man to live--and not just him, because among other accomplishments Steve Gleason and his wife Michel have achieved, he led efforts to enact legislation, the Steve Gleason Enduring Voices Act, to make these devices available to those suffering from neurodegenerative diseases. It was a bill that I was privileged to introduce and that has passed into law.

Steve continues to challenge the heads of industry and medicine to improve the technology and the science to find a cure for ALS. He opened the Team Gleason House for Innovative Living, where up to 18 people can live as productively and as independently as possible.

A few years ago, Steve hosted a global summit, bringing together researchers, patients, caregivers, and others in the ALS community. The summit resulted in the single largest coordinated and collaborative ALS research project in the world, called Answer ALS. It has nearly 2 dozen research institutions, 1,000 patients, and 20 trillion data points that will help to find unknown pathways to lead to new treatments or to cures.

In recognition of Steve's work, in April I introduced legislation with Senators Murray, Kennedy, and Cantwell to honor Steve Gleason with the Congressional Gold Medal. Steve's story is so compelling that in less than 2 months, over 70 of our colleagues joined to affirm Steve's inspiring story and impact upon his fellow Americans to make him worthy of the highest honor Congress can bestow.

Steve should be awarded this medal. He is an example of what makes our country great. He has given hope to many. He gives hope to all those who have ever received a devastating diagnosis, and his message is simple: Your life still has meaning. Your best years can still be ahead of you.

Steve is a role model, not just for those in the disability community but for all Americans. I suspect that what he may appreciate most about this honor is the attention it brings to find solutions and cures for those with diseases such as ALS.

I would like to thank my colleagues, their staff, and everyone else who has helped build support for this legislation including Microsoft, the ALS Association, the NFL, and the New Orleans Saints.

I wish to encourage my colleagues in the House to cosponsor this legislation and to pass it as soon as possible.

I would like to thank Steve for continuing to be an example of commitment, perseverance, and inspiration.

2652 and the Senate proceed to its immediate consideration.

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