Triangle ALS walk aims to promote awareness and research for rare disease

RALEIGH, N.C. (WTVD) -- This weekend, hundreds are expected in downtown Raleigh at the Halifax Mall for the annual Walk ALS event.

The event promotes research for the devastating neurological condition that still has no cure. ALS is a rare disease that weakens muscles and impacts physical function as nerve cells break down. It's estimated that there are around 30,000 people in the United States living with the condition.

One of them is Pastor Troy Tatum, from Hillyer Memorial Church in Raleigh.

After months of leg weakness, and ruling out other causes, the pastor was diagnosed with ALS in 2022.

He kept working months after, when his church installed handrails and elevator to accommodate his mobility issues, but eventually, after wanting to spent more time with his family, he made the difficult choice to step down as pastor.

But he said the ordeal has made his faith stronger.

"When I was faced with this, it really made me face the question of if this really what you believe or is that just what you've been telling folks," Tatum said.

He said he's lucky the progression has been slow -- most of the impacts now are in his lower body only. He has to use a wheelchair to get around.

"It's tough in all things you look back on things and say you know I'm not going to be able to do that anymore," he said.

He shared his experience at local Triangle ALS events and even lobbied the North Carolina congressional delegation in Washington for more research funding.

"There's not a huge community of support to advocate for this, because when you're diagnosed with this, you're given 2 to 5 years to live on average," he said.

But things have come a long way. Dr. Richard Bedlack, the distinguished professor of ALS at Duke University said when he began studying the disease more than 20 years ago as a student, doctors had a much more bleak outlook.

"I was just horrified when my attendant came in and said, 'We don't know why this happens and there's really nothing we can do about it. Go home and get your affairs in order.' And I drove home that day and I said, 'You know, there's got to be a better way,'" Bedlack said.

Now he has 500 patients at his clinic in Durham, and he's inspired by new promising studies. Looking into genetic mutations found that some people with the disease shared environmental factors; they also uncovered new drug treatments that could provide a breakthrough.

"I think in the short term, we're learning ways that we can help people manage their lives and have a good quality to their lives. But in the long term, we're understanding what's causing the disease," Bedlack said.

Walk ALS will be taking place this Saturday morning at Halifax Mall in Raleigh. ABC11 will have a team there honoring the late anchor Larry Stogner, who lost his own battle with ALS in 2016.