RALEIGH — Teresa Spangler is comfortable in the innovation space. As the founder and CEO of several entrepreneurial organizations, including the well-known innovation consultancy and technical services company Plazabridge Group, Spangler has made a career of driving innovation and growth in North Carolina.

Now, she faces a new battle—funding and inspiring more innovation toward ALS research as she battles with her own ALS diagnosis.

Photo provided by Teresa Spangler

ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, according to the ALS Association. Also called Lou Gehrig’s disease, the condition is notoriously hard to diagnose and, at this time, has no cure, although advancements in research in the last few years have led to seven FDA-approved drugs to treat ALS and its symptoms.

Spangler told TechWire that her background in innovation has helped motivate her to envision a new future for ALS research—even if there isn’t a clear path yet.

“Innovation, right?” Spangler told TechWire. “No one wants to believe the innovation is gonna be great until it’s great, and then, they all want to get behind it.”

When asked if her background in entrepreneurship and innovation helped to face her new diagnosis, Spangler said that it “absolutely” had.

“I think it’s very helpful,” said Spangler. “I mean, it’s not my first challenge. It’s definitely the biggest challenge I’ve ever faced. But dealing with uncertainty, maybe there’s a calmness that I have in dealing with that.”

Spangler’s daughter, Merritt Spangler, and niece, Jessie Williams, have organized a GoFundMe page to help fund both Spangler’s care and advocacy work. They plan for at least 35% of donations to go toward Target ALS, a biomedical research nonprofit dedicated to accelerating the discovery of effective treatments for ALS, according to the donation page.

Just this week, Merritt Spangler and Williams announced that the campaign had received over $32,000 — and that Spangler had officially made a first donation of $11,418.50 to Target ALS.

In addition, Spangler will interview the founder of Target ALS, doctor and ALS patient Dan Doctoroff, on her podcast.

Fighting for a diagnosis

Spangler told TechWire that she had to fight just to be diagnosed with ALS — and part of her drive to advocate for ALS is a hope that others don’t have to fight to be heard.

“If your hand is dropping, don’t let a doctor tell you it’s carpal tunnel,” Spangler said. “If a physical therapist tells you you need to see a neurologist, and your doctors ignore that because they think, ‘She’s just a PT.’”

Spangler shared that, despite her physical therapist’s recommendation that she see a neurologist, she couldn’t get a referral. Eventually, family members encouraged her to visit the emergency room; one of Spangler’s nieces helped her navigate the medical system to “get the neurologist to pay attention,” Spangler said.

Finally, on August 18, 2023, she received results of an EMG that indicated she might have ALS.

“That was the first time I’d ever heard the words ‘ALS’ as, you know, something that would be pertaining to me,” said Spangler.

She then followed up with tests at Johns Hopkins and Duke.

“It’s never a firm diagnosis,” Spangler said. “It’s always ‘likely.’”

But now, Spangler is receiving treatment at the Duke ALS Clinic under the care of Dr. Richard Bedlack.

“It’s got a very good holistic view,” said Spangler. “So I’m on all the meds, but I’m also on B-12 injections, and turmeric, and all these different things that he’s seen some improvement.”

Something she told TechWire that she wants to share is how quickly the disease has affected her life. Just this past June, she was still hiking and considered herself “active.” Today, she can no longer walk, after an injury to her foot last month led to her using a wheelchair full time.

“I think it’s important to know that, you know, people with ALS, something might work one day, and you wake up the next morning, and you can’t do that thing that you could do,” said Spangler. “And I do think that the amount of patience… and the amount of patience my family has to have is enormous because it’s a lot on them, but also the amount of patience I have to have.”

Richard Spangler and Teresa Spangler | Photo provided by Teresa Spangler

Spangler offered insight into what it’s been like for her to adjust.

“I was used to getting up at 5am, and I’m on my computer and I’m reading the news,” she said. “Now I have to wait for everybody else to get up, you know?”

An entrepreneur, former Red Hat exec—fueled by innovation

As a woman entrepreneur in the tech space, Spangler is an example of the opportunities for women founders in tech, helping amplify the tech entrepreneurship pathway for the next generation of women founders. Just this year, she was named to the 2023 class of The North Carolina Women Business Owners Hall of Fame (NCWBOHOF).

As a senior executive at Red Hat, she played a pivotal role in leading revenue growth pre- and post-IPO. After the company’s successful IPO, many former Red Hat employees went on to start their own successful startups, including Spangler, who founded Plazabridge Group in 2002.

In addition, her involvement with organizations like the Council for Entrepreneurial Development (CED), where she was a board member from 2007 to 2015, and The NC World Trade Association, allowed her to share her knowledge and expertise with other entrepreneurs in the state.

And as the Chair of the non-profit arts organization Night of Dreams, Spangler demonstrated her commitment to giving back to the community and supporting local artists and musicians. (Spangler herself is a musician; she played guitar and sang as the lead singer of The Headless Chickens.)

Through her work as an author, speaker, and podcast host, Spangler has shared her insights on entrepreneurship and innovation with a wide audience, inspiring others to pursue their own entrepreneurial ventures and make a positive impact in their communities. Her book, All That I Am Now That I Know, includes 17 life lessons for entrepreneurs and is available on major online book retailers such as Amazon, Apple, Goodreads, Google Play, and Barnes & Noble.

Through her podcast series, FutureForward, Teresa features conversations with successful leaders, CEOs, founders, and innovators about building resilience in times of uncertainty, which can be especially valuable for women entrepreneurs who may face unique challenges. (The interview of Spangler with Doctoroff will be published on her podcast.)

Next for Spangler—more innovation, more hope

When asked if her career has helped to shape her approach to fighting ALS, Spangler said that it has.

“I think, absolutely, being a fighter, it’s going to help me continue to fight,” said Spangler.

Merritt Spangler posted a video update on the GoFundMe page this Friday, sharing an inside look at how the family is adapting.

Spangler has been an Adjunct Professor and a Technology Transfer and Innovation Specialist at Appalachian State University since 2022 and plans to continue working with the university in the spring semester, she told TechWire.

Her hope is to bring speakers into the classroom who can help share more information about ALS and advocacy.

“Dr. Bedlack said he would come up to App, and that kind of voicing, you know, is how you raise awareness,” said Spangler. “You gotta get the funding. Trying to advocate for funding to these research organizations that are doing great stuff, that’s really important to me.”

For more on how Spangler is fighting, check out her GoFundMe page.