NEW YORK -- Former Saints player Steve Gleason has told the medical community, “save my voice, my lungs and my thumbs, and I promise to change the world."
And Thursday, in his effort to save the ability to communicate for people with ALS, he traveled to New York to make a plea.
Gleason has performed in front of a world audience before, on the gridiron in cleats. But Thursday it was at the United Nations in New York in front of Fortune 500 corporate executives, venture capitalists, government leaders, emerging market investors, foundation heads and social entrepreneurs from in a wheelchair.
“I began keeping a video journal library where I in some way discuss topics from academics to alcohol to religion to sex, you name it, to essentially to share my heart and my mind with Rivers, my son, so that it’s possible we will never have a voice-to-voice conversation, but it's impossible that we will not have a conversation,” Gleason said.
The goal is to raise awareness and funds so that social challenges of today can be solved tomorrow. Gleason knows there is no medical cure for his ALS, also called Lou Gehrig’s Disease, but he knows technology is a cure for the voice his body can no longer support but his mind can perfectly form.
A computer and Gleason share the same voice.
“This summer I began working with CereProc recording my voice to a voice bank. We have created a synthetic voice that sounds like my own voice. I hope you like it because you will be hearing from me for decades to come,” Gleason’s recording says.
His friend and former teammate Scott Fujita helps with the little things a sip of water and the big ones.
“We are in the early stages of a campaign to help build the world’s second ALS home residence down in New Orleans. There's one in Boston,” Fujita said. “It’s a fully functioning, fully automated home that allows patients to control everything electronically technologically and be completely independent.”
There is already eye-tracking software for people to navigate a computer with their eyes. They can type with their eyes and the computer speaks for them when they lose their voice.