Woman helping connect ALS community through app “Pathfinders”
By Beret Leone
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MINNETONKA, Minnesota (WCCO) — A Minnetonka woman is helping connect the ALS community through an app.
On Jan. 5, 2022, Faith’s son, Scott, was diagnosed with ALS. ALS is a fatal neurological disease that affects nerve cells in the brain and spinal cord. Scott was 50 years old at the time of his diagnosis. He was a marathon runner and avid cyclist.
“For parents with children with ALS, no one wants to think they’re going to watch their child die before them. It’s just not the way it goes, right?” Faith said. “Our children are supposed to outlive us.”
Scott is what doctors call a “slow progressor.” So right now, he doesn’t need as much help from caregivers. It was his diagnosis that inspired Faith to do more.
“I’m going to spend as much time as I can working for the great ALS community and working to make their lives as good as we possibly can under the circumstances,” Faith said.
Faith thrust herself into research and organizations supporting the cure for ALS. She started getting involved with Everything ALS. It’s a nonprofit that’s committed to bringing technology innovations and data science to support efforts from care to cure for people living with the disease. Everything ALS does that through patient-driven research, and most recently — an app.
The organization launched an app-based program called “Pathfinders” a few months ago. It’s aimed to empower, connect and offer essential resources to the ALS community.
Those impacted by the disease know it can be isolating. Through the app, the ALS community can connect with one of nine pathfinders. Faith is one of them.
“When you give, you get,” Faith said. “So for me, giving to other people the love and response that I get from them, knowing that I’ve helped them, it just warms my heart. That feeds me.”
Both caregivers and people living with ALS can reach out to a pathfinder about anything — from anticipatory grief to catheter recommendations to other ALS-related resources.
“People can read our bios and say, ‘Oh this is the mother of someone with ALS. That’s who I want to talk to because my child has ALS. They will truly understand my situation.’ Or, ‘Oh this pathfinder is a veteran. I need to learn more about the VA benefits. I’m going to connect with this pathfinder.'” she said.
Right now, Everything ALS is still working to add more pathfinders to cater to more people and ultimately connect more people. The goal is to be able to provide the person on the other side of the app chat with whatever information, resources, or listening ear they might need.
If you’re interested in the program reach out to Faith at faith@everythingals.org.
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