‘My mind is still functioning, but my body isn’t’: St. Petersburg man with ALS finds help through local nonprofit.

ST. PETERSBURG, Fla. — The disease ALS is often described as a thief — stealing a person’s ability to move, speak and eventually breathe, while their mind stays fully aware. It’s also one of the most expensive diseases to manage, requiring specialized equipment, around-the-clock care and constant support.

For Rob Pope and his wife, Tammy, the toll has been both emotional and financial.

Rob was in his early 40s and in good health when he started losing his balance and slurring his speech. Within a few years, he was diagnosed with a slow-progressing form of ALS, or amyotrophic lateral sclerosis — the same condition once known as Lou Gehrig’s disease.

“That has been the hardest part,” Pope said. “My mind is still functioning, but my body — the one thing that I thought I could always depend on — is no longer working.”

As Rob’s condition worsened, Tammy became not just his wife but his full-time caregiver.

“It’s heartbreaking,” she said. “One of the things we struggle with a lot is that caregiving takes over being a wife. That’s hard — that’s a struggle for us.”

ALS has also been called “the bankruptcy disease” because of the staggering cost of care. Deb Fabricatore, director of development for HARK ALS, said families often spend hundreds of thousands of dollars out of pocket.

“It does often cost families $200,000 after insurance to care for their loved one,” Fabricatore said.

HARK ALS, a nonprofit organization with a chapter in St. Petersburg, works to ease that burden through small grants that cover expenses insurance won’t. From wheelchair repairs to mobility van maintenance, the group’s help can mean the difference between independence and isolation.

For the Popes, that help came when their van broke down unexpectedly.

“It was like $700, and I didn’t know what to do,” Tammy recalled. “I reached out and HARK said, ‘Send me the invoice — we’ll take care of it.’ It was such a weight lifted.”

To continue supporting local families like the Popes, HARK ALS will host its second annual fundraiser at The James Museum in downtown St. Petersburg on Nov. 2. The event will feature food donated by local restaurateur Matthew Smith, owner of The Hangar Restaurant.

“I’m absolutely blessed to be in the position I am,” Smith said. “I’m always first in line to give back.”

Despite the challenges, Rob continues to find joy in the simple things — spending time with his family, fishing and working on a 1937 Cadillac with his dad.

“I love being on the boat and fishing,” he said. “He’s still captaining — we still get on that boat and he puts us on the fish.”

Funds raised from HARK’s event will go directly to Tampa Bay families battling ALS — not to research, but to the day-to-day support that helps them live with dignity.

HARK ALS is holding this fundraiser with the help of so many local businesses: The James Museum, The Hangar, Jay LaMalfa ICG Next Finance, Cirsco Roofing, Albright Roofing, The Artistic Whisk, Duke Energy, The Whiskey Exchange and many more.

Click here for more information about HARK ALS and the upcoming fundraiser.