‘I’m still here’: St. Luke’s data engineer finds new voice while fighting ALS

“My name is John Ward and I’m still here.”

Such a simple sentence, but it says so much. And the ability for others to hear it, that means everything to Ward.

A data engineer with St. Luke’s Integrated Health Technologies’ data and analytics team, Ward has amyotrophic lateral sclerosis, or ALS. It is a terminal neurological disorder that affects the neurons that control voluntary movement and breathing.

Early this year, Ward lost his ability to speak.

“The reality of not having a voice leaves me trapped inside my head a lot of the time,” he said.

Working with St. Luke’s speech language pathologist Erin Tanskley, whom Ward calls “the MVP,” he was set up with tools and resources helping him communicate, including technology that cloned his voice.

The IHT team then found a way to allow Ward to utilize that voice in Microsoft Teams so he could interact easily while at work. Though ALS has prompted an early retirement, Ward has been thankful to not just be part of a team, but also having support while maintaining dignity.

“Being accommodated like this has meant everything and I appreciate everyone’s help and input,” Ward said.

Please check out the video below, produced by St. Luke’s IHT systems analyst Jason Hudson, on Ward and his journey.