📱App connects people with ALS, caregivers to supportive tools, guidance

MELBOURNE, Fla. – Every 90 minutes, someone gets diagnosed with ALS. And every 90 minutes, someone dies from the disease.

There’s no cure and the statistics are discouraging, but there’s a mobile app that’s creating hope for people living with ALS and their caregivers.

“ALS is a horrifying diagnosis to come to grips with... What happens is it takes a while to get the diagnosis because you have to rule out every other possibility of your declining functions and there’s no definitive test for it,” said John Hudaecek.

John lives in Melbourne and was diagnosed with Amyotrophic Lateral Sclerosis, or ALS, in 2021 after losing most of the function in his left arm. The disease is a slow progression weakening of the muscles, leading to paralysis and inability to breathe.

“There’s no cure. It’s fatal. And the average life span is two to five years,” said John. “Yes, I’m scared every day, but I have to concentrate on what I can do and what helps me get through the day.”

Part of what gets him through the day is supporting other people with ALS, or “pALS” with the EverythingALS Pathfinders Program. It’s all part of the Everything ALS App available on Apple and Android devices. John is a partner of the Pathfinders Program.

“People can look at our bios and figure out who comes the closest match -- going through what they are -- and ask questions. The kind of ones that are very embarrassing. The normal day-to-day things you take for granted, all of a sudden you can’t do so it’s nice to be able to connect with someone who understands and can offer guidance,” said John.

The free app connects more than 7,000 pALS, researchers, caregivers and pharmaceutical companies from all over the world. Sharing information and experiences about the disease, new treatments and offering one-on-one support with people like John through a chat function.

“People can send messages like ‘I’m in this stage of my progression, has anyone else had this happen? And get an answer like ‘yes I have, and here’s what equipment I recommend,’” said John.

There’s also an AI function loaded with information from physicians for quick answers about the disease.

As for John, he knows he has a difficult road ahead, but he continues to live his life to the fullest, traveling the world with his wife Susanne and continuing to be an advocate for pALS through EverythingALS.

“Don’t give up hope. There are hundreds of people out there working on solutions and research is ongoing. I truly believe a cure will happen in my lifetime, and even if it doesn’t help me, I hope it helps others,” said John.

Even with ALS, John said he’s one of the fortune ones, the disease only affecting his upper extremities right now. He stays optimistic and offers up his time day or night to support other people diagnosed with ALS.

The EverythingALS App is updated often with new expert talk videos, research and new treatment options.