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Charlotte ALS foundation helping patients, families grappling with diagnosis

"This gives me more independence," Niki McDonie said of the Joe Martin Foundation. "I feel more on my own."

CHARLOTTE, N.C. — ALS, often referred to as Lou Gehrig's disease, is a devastating, incurable disease that gets progressively worse. A prominent Charlotte family who lost their dad to ALS almost 20 years ago is continuing his dream by seeking solutions and helping others, potentially saving lives.

Joe Martin was a high ranking and beloved Bank of America executive who battled ALS for nearly 12 years. After he passed, his caretakers and family teamed up to start the Joe Martin ALS Foundation in his honor to provide mental and physical help for people with ALS. The foundation even provides important equipment and often aides for free for their families.

"This is what he wanted to happen, and it's happening, and every year, it gets better," Joe B. Martin, Joe Martin's son, said. 

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It's help that has meant a lot to Niki McDonie.

"I have a rare, but lucky, form of ALS, in that it moves extremely slow," McDonie said.

It may seem hard to imagine McDonie calls herself lucky, the 44-year-old is grateful, despite battling a daunting disease.

"It changed everything," McDonie said. "I went from an independent person who had a career and a life, and it took all of that away. I had to relearn things, and I had to learn how to accept help."

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Credit: WCNC Charlotte
Niki McDonie

McDonie said the help from the foundation has been a game changer. 

"This gives me more independence," McDonie said. "I feel more on my own."

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The disease can be overwhelming, she shared.

"Every day, something is getting worse, and every day, you have to learn to do something new to adjust to that, so you have constant questions and anxiety about where your life is going to go, what’s gonna happen next, so it changes your whole outlook on life," McDonie said.

Joe B. Martin knows that all too well. Now, he and the rest of the foundation are working to spread awareness, bringing Broadway star Aaron Lazar – who is also battling ALS – to Charlotte for a special performance on April 18. The star will talk about his own battle and the quest for a cure.

"This is really a gift back to the community, to help people, help the community be better at being a community, because there is somebody around you who needs some hope," Joe B. Martin said.

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Like McDonie, who said, in addition to sending an aide to help her and all kinds of equipment, hope is the thing she needed most, and that’s what the foundation gave her.

"They step in and make you take a deep breath and realize you can do this one thing at a time, and they send help," McDonie said.

The foundation is in the process of expanding to Greensboro and Wake Forest. If you’d like more info on the upcoming event or need help for a loved one, check out joemartinalsfoundation.org.

Contact Michelle Boudin at mboudin@wcnc.com and follow her on Facebook, X and Instagram.

WCNC Charlotte is committed to reporting on the many issues facing the communities we serve. We tell the stories of people working to solve persistent social problems. We examine how problems can be solved or addressed to improve the quality of life and make a positive difference. WCNC Charlotte is seeking solutions for you. Send your tips or questions to newstips@wcnc.com.

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