From Heartbreak to Impact: Claire Stern’s New Life Mission and Role with NDSU Women’s Basketball

After a life-altering diagnosis, the NDSU sophomore is redefining impact beyond the court.

FARGO (KVRR) – Claire Stern has always believed there was a purpose behind every challenge. When she learned that most people with her condition don’t survive infancy, that belief only grew stronger.

“It was really crazy to hear what was all going on that night, and that normally they lose these people as babies,” said Stern. “I’m very grateful for all the opportunities I’ve gotten. I’m grateful that God chose to keep me here, and I think that there’s a lot of good that will come out of it. I’ll be able to impact people. That’s what I want to do.”

It’s a positive attitude after hearing some of the toughest news a person can receive.

The NDSU Bison sophomore started playing basketball in kindergarten, eventually working her way toward her goal of playing Division I basketball. That dream became reality at North Dakota State, but following her freshman season, it was suddenly taken away. (June 2025)

“She was hanging out watching a movie, and they thought she had passed out, which is something Claire’s never done before,” said her mother, Sheila Stern. “It was kind of late at night, and she hadn’t been feeling well for a couple of days. So I was like, you know, this isn’t normal. Let’s go ahead and head into the ER—mom intuition, if you will.

“So we went in, and thankfully we did, because she had another what we were thinking was a pass-out, seizure-type event in the lobby. The nurse came flying out and said, ‘That’s not a seizure, mom—that’s a cardiac event.’ That is when we knew we were in for who knows what.”

What they were in for were several more cardiac events the night Claire was first admitted to the hospital. It took doctors 24 days after her first cardiac event to determine what was wrong.

Genetic testing revealed Claire has a rare mutation in the PPA2 gene, which affects the mitochondria—the part of the cell that produces energy. The condition had been quietly damaging her heart over time, until it was pushed beyond its limits.

“It’s super rare,” Claire said. “Less than 60 people have been diagnosed with this, and there are only a handful of us still alive with it. The doctors don’t know much about it because of how rare it is, but I don’t think that that’s a good answer.

“I think that there needs to be more awareness brought to not only mine—because mine’s obviously rare, too—but all kinds of genetic mutations. The answer shouldn’t be that they just don’t know. It should be: here are some steps we can take to get in the right direction.”

That mindset led Claire to start the RareDNA Foundation, dedicated to improving outcomes for families affected by rare genetic heart mutations.

“I think the main thing about it is just, like I said before, raising awareness,” Claire said. “Genetic mutations aren’t normally a thing that people recognize until it’s either too late or something severe happens. I think the big thing is just raising awareness and also making sure that we come up with a better treatment plan. I wasn’t given a very good treatment plan originally because they didn’t know what was going on, and that’s not okay with me—for myself or for future people that get diagnosed with it.”

On Saturday, the Bison program did its part in helping promote Claire’s foundation. The team wore shirts, and a table was set up to help provide more information.

“I originally kind of brought up just doing maybe a little fundraiser night of some sort to help go toward this awareness and these things that we want to donate to,” Claire said. “Our coaches really ran with it—they loved the idea. There have been a lot of meetings that have gone into it, and I’m really thankful that they were so excited about it and willing to help me.”

For her mother, seeing her daughter turn a negative into a positive does not come as a surprise.

“That’s just Claire,” Sheila said. “I think that part of that is her mentality that made her a D1 athlete, right? She had that internal strength, that push, that fire, that wanting to make an impact. It’s just been having to transition a little bit now from not necessarily on the court, but how can I do that off the court?

“She feels very, very strongly that, yes, she’s considered rare, but she’s just rare that she’s alive. She’s not rare by what this condition is, and that’s kind of her mission—to make that known and get awareness out there. The cardiologist didn’t even know about this when they were treating her for two weeks. That awareness out there that, ‘Hey, this is an option.’ And by the way, it’s deadly. So maybe we should open our eyes and pay attention to it. She’s just always had that self-internal drive and that personality of, ‘I’m just going to go do something about it.’”

With her diagnosis, Claire was told she can no longer play basketball and had to medically retire.

“It was heartbreaking, for sure,” Claire said. “I’ve been playing for so long, and it really became a part of who I am and my identity. Having such a great support system here at NDSU helped a lot. I think just having that showed that everything was going to be okay and that I’d still be able to be a part of this team. So I’m very grateful for all of the good that has come out of it.”

As for Claire now, she remains a big part of the Bison program, transitioning from player to student coach—always with a smile on her face.

“You know, she’s everybody’s friend,” said Bison women’s basketball head coach Jory Collins. “She’s great with everybody. She’s there. Sometimes she’s on the offensive end, sometimes she’s on the defensive end. She’s honestly just there as a positive, positive influence—whether she’s helping in drills, doing film stuff, or just putting a smile on people’s faces. She’s helped us in a variety of ways.”

“She’s honestly just really inspiring,” said junior teammate Avery Koenen. “To see how she’s turned, you know, maybe a negative situation into a positive one—a really positive one. Being able to support us, and you can watch her on the bench too—she’s obviously super excited and positive for everyone, no matter what’s happening. Just seeing how someone can turn something like that into a good thing.”