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ALS Worldwide
April 04, 2017

Steve Gleason Never Backs Down From a Challenge, Not Even ALS…

"More than six years after being diagnosed with amyotrophic lateral sclerosis, commonly referred to as ALS or Lou Gehrig’s disease, Gleason is busier than ever. The former New Orleans Saint can be found on the sidelines at most home games. The documentary about his battle with ALS, Gleason, debuted at the 2016 Sundance Film Festival, and he’s been touring film festivals and awards shows across the country for the last year.

Gleason’s biggest job is keeping up with his 5-year-old son, Rivers. “I want to experience everything I can with him,” says Gleason. “He is incredibly active, so sitting idly is not an option.”

Until a cure is found for ALS, Gleason is tackling it the only way he knows how, using technology. Gleason reached out to communications device manufacturers with suggestions and began using a tablet that connects with eye-tracking controls. A sensor followed his corneas to control the cursor on the screen.

The makers of the tablet, Microsoft, heard Gleason’s story and put him in a Super Bowl commercial. He began working with Microsoft to improve the tablet. It’s now used by a number of ALS patients and costs less than $3,000.

The company also invited Gleason to participate in a hackathon competition. Employees worked to develop technology that would enable him to play with his son, talk more easily with his wife and move his wheelchair independently.

“Losing the ability to move on my own was difficult,” says Gleason. “For a long time, I had use of one finger or limited knee or head movement to control my chair. When that was finally lost, I felt discouraged and completely helpless to engage with my son and others.”

The hackathon team developed an eye-tracking wheelchair and now, with Gleason’s help, a powerchair EyeDrive system with Microsoft is making its way to the FDA for approval. “Developing the system has been entirely and completely liberating,” he says. “I can now drive my chair without the help of others when using the eye-tracking interface.”

Gleason says losing his voice was, by far, one of the most difficult things to process. Soon after his diagnosis, Gleason “banked” his voice. Most augmentative communications devices use a computerized voice. Voice banking allowed Gleason to record his own voice so it sounds much like the way he used to speak. He says the technology wasn’t new when he used it but voice banking wasn’t well known and was also cost-prohibitive. “I was one of the first with ALS to bank my voice and now many groups offer this service at a reduced cost,” says Gleason.

Gleason hopes to help other patients with ALS live with purpose and remain productive. Improving technology, he says, is key. “We hear constantly how the devices we provide and have helped improve have led to many choosing to live, and live fully, despite ALS,” says Gleason.

A football player, a businessman, an inventor, a movie star, a husband and a father, Steve Gleason could never be considered average."

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