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Steve Gleason Speech 2018

Hi there everyone.

Thanks Megan, for that great introduction.

Can you hear me ok?

Excellent.

I've had a couple glasses of wine, so I apologize if I slur my words.

Luckily, I don't have to drive home.

Thank you ALS.

Thank you all for coming this evening. It is an honor to be here, for the 40th birthday of the biomedical engineering department. I also celebrated my 40th birthday earlier this year, so, I can certainly relate to being totally awesome for forty years straight.

I certainly admire the work done by the Tulane Design Team, it is not only providing solutions, but also bettering students and people who will make an impact on the world.

Let’s take a moment to acknowledge the leaders, who are guiding these students.

Thank you to Dr. Jobs, Dr. Raymond, Dr. Gilbertson, and Dr. Gaver. Without your inspiration, and guidance, these students talents might not have found their way to helping the residents at the Team Gleason House. Also, thank you to the Suhren Foundation for sponsoring the lecture.

Also, thanks President Fitts, for fostering this community.

And finally, thanks to the Astros for winning the world series.

My good friend in Los Angeles will have to wear a Houston hat in L.A., because of a bet my son Rivers made. That will be a pretty glorious day.

Anyway, thanks for having me today. I’m honored to be a part of this celebration.

Let me get the depressing stuff out of the way. I think it is necessary.

On January 5th, 2011, almost seven years ago, I was diagnosed with amyotrophic lateral sclerosis. ALS. A terminal diagnosis.

The experts told me the average life expectancy for someone with ALS is 2-5 years. Let me just say, that those 2 sentences can really f*** with your head.

ALS is a disease that affects the nerves or motor neurons in the brain and spinal cord. These are the nerves that tell your muscles what to do. With ALS, messages from those nerves gradually stop reaching the muscles, leading the muscles to weaken, and waste away.

As a result, people ordinarily end up fading away quietly and dying.

Fortunately for me, and for the residents at the Team Gleason House, ALS does not affect the mind, and rarely affects the eyes.

When Lou Gehrig was diagnosed with ALS in the 1930s, there were no effective medical treatments available. Likewise, when I was diagnosed with ALS in 2011, there were no effective medical treatments available. That is still true today.

After trying to digest the news of being diagnosed with a disease that is terminal, and has no effective medical treatment, I chose to do some research. What I found was much more encouraging than my medical doctors had offered. I found that, with the use of ventilators and innovative technology, patients were continuing to be productive and purposeful for years, even decades.

As I stated earlier, since Lou Gehrig’s death there has been no effective medical therapy development for ALS patients. During the same time period, technological advancements for ALS patients have been like the technology industry. These technology advancements have been exponential.

In a sense, while there is no medical cure, technology can act as a cure. Stated another way, most of what ALS takes away, technology can give back. Technology similar to what is being developed here at this school.

The technology I use is very beneficial. I am able to type, speak, and navigate a computer or tablet no different than any of you ordinary humans.

I can text, tweet, even pull up any song I want on Spotify. We have recently developed a program where I can drive my wheelchair with my eyes. This is entirely liberating.

At the Team Gleason House, ALS patients can control their environment, computers, TVs, lights, doors, elevators, using just their eyes. This innovative concept allows patients to live as independently as possible. It can also allow them to continue to be productive & purposeful.

As beneficial as this technology is, I believe more can be done.

As far as it has come, current technology options for ALS patients, or anyone challenged with disabilities, technology options are lacking.

The hardware is still severely under-powered for modern communications, and totally inadequate for someone tech savvy to do any remote work.

Fortunately, after I was diagnosed, Team Gleason partnered with Microsoft to allow users like me to use this surface tablet from Microsoft. It's a giant leap forward.

Despite this recent development, I believe there is an opportunity available, right now, and this is why we are so grateful for the work being done right here at Tulane.

Historically, the technology for people with neurological disorders has focused on incorporating the users’ eyes, voice, or thoughts, to interact and control computers. And historically, this technology was so far removed, that it did not cross over to a broader market beyond people with disabilities.

That is changing and changing rapidly. Most recently, we have seen a collision between medical technology and the broader, global marketplace.

As most of you have experienced with Siri, Alexa, or Google search, voice activated technology is widely used today. And eye tracking technology is beginning to surface in the general marketplace.

As crazy as it seems that I navigate my computer and chair with my eyes, someday soon you will do the same thing. Through our partnership with Microsoft, eye tracking technology is now part of Windows 10, for you ordinary humans. We didn't want to leave you behind.

Furthermore, in the not too distant future, we will use our thoughts to control machines. The point is, that I see investing in leading edge technology as not only important because it is for a good cause, but because of this ‘collision’ it is valuable in the global marketplace. To capitalize on this opportunity, I see the need for a few key elements.

One of those elements is the need for more entrepreneurs. People like your students, or student leaders, with not only vision of the opportunity, but also the skills, and wherewithal to cast this vision to others, and build a roadmap to make the vision reality. Fortunately, we have a motivated biomedical engineering team right here, who believes the same.

Another element is having a community to foster and nurture progress.

As most of you know, New Orleans has quickly become a launch point, for entrepreneurial ventures. Furthermore, the emerging biomedical district, will place New Orleans in position to impact the world nationally and globally.

As a result, I believe, we are in the right place at the right time with the right people, to create a thriving community of innovative medical technology experts that will help others turn their disabilities into super abilities.

I believe it is possible for me to have a live conversation with someone and, not have to make them wait for me to type my thoughts. I want to help make this happen. I believe this group can help make this happen.

As one of the older biomedical institutions, we have the experience and expertise to make this happen.

Thanks again for having me here tonight, have a wonderful evening. Peace.

(edited for publication)