For ALS Awareness Month, we asked members of the Les Turner ALS Foundation’s Support Services Committee to help us explore topics in ALS that people should know more about.
For the third week of May, we’re looking at the financial cost of ALS, something that weighs heavily on the families affected by this disease. The following is the experience of Frank Granata, who serves on the committee and our board of directors, and is also living with ALS.
When Frank Granata was diagnosed with ALS in 2019, he was still working in a career he loved — managing international banking accounts, traveling, and using his sociology and philosophy background to navigate complex systems. But as his symptoms progressed, particularly weakness in his hands and difficulty using a computer, he faced a hard truth: he could no longer do his job.
“The first thing to go was working,” Frank says. “I had a good-paying job, but I knew I needed to focus on managing my symptoms and easing the burden on my family.”
Like many people living with ALS, Frank’s financial challenges began with the loss of income — and quickly grew to include the rising cost of care. “Getting used to not working is still something I’m adjusting to,” he says. “But the financial reality is, ALS gets more expensive over time.”
As his needs changed, so did his expenses: home modifications, durable medical equipment, assistive technology, and eventually the transition to an electric wheelchair. Some of the costs have been offset by insurance or nonprofit support. Others, like voice banking, ramps, and in-home assistance, have come out of pocket.
And what weighs on him most isn’t just the immediate cost — it’s the long-term implications for his wife. “We’ve done well, but I think about her future every time I write a check,” Frank says. “She’s six years younger than me, and I want to make sure she’s okay down the line. That she can retire, stay in the house, have what she needs.”
Beyond his own experience, Frank hears similar concerns in the ALS support groups he attends and helps lead. “Everyone’s situation is different, but the financial strain is universal,” he says. “It’s the unknowns — when will I need a hospital bed? Will I need to hire help? How much time do I have to plan?”
He points to in-home care, adaptive equipment, and transportation as particularly heavy expenses. “Eventually, you need that wheelchair-accessible van — and that’s $85,000 to $100,000,” Frank notes. “Insurance might help with the chair, but how do you get it to where you need to go?”
Despite these pressures, Frank is committed to optimizing what he has for as long as possible. “I work out. I use breathing techniques. I’m pushing myself to stay strong,” he says. “But even so, the financial part is always there. It’s not just money — it’s time, energy, and planning.”
He hopes that policymakers, donors, and the public understand that ALS care goes far beyond medical appointments. “We need more research, yes — but we also need support for people just trying to get through the day,” he says. “That means in-home help, better insurance access, and tools that make life more livable.”
Your donation helps ease this burden for people living with ALS. Support services, grants, equipment, and personalized care are made possible by people like you. Please consider making a gift today.
