Rare Enough: DJ Stewart brings education and advocacy to life
DJ Stewart didn’t set out to become an advocate or a voice for survivors. But through sharing his story and fighting through the odds, that’s exactly what he became.
“I’m a lifelong, 20-plus-year skateboarder,” Stewart said. “All of that being here in Kansas City. I’ve gotten to travel all over the country, different parts of the world, riding this little piece of wood that has done so much for me.”
About seven years ago, Stewart began experiencing pain in his knee. “I doctor-skateboarded myself,” he joked, brushing it off as a result of past injuries. Eventually, he went in for a checkup, and a small mass was removed from his knee.
“It kind of looked like… if you’ve ever had a gobstopper when you were a kid and you suck on them long enough and they turn white. Like it’s this little weird white ball. And I remember when he showed it to me and then he dropped it in the tray, it actually like made a sound.”
The mass turned out to be a low-grade tumor called a leiomyosarcoma. Months later, Stewart began experiencing what he called “deja vu attacks.”
“For no reason whatsoever, I would get a feeling similar to when you get déjà vu. But it was like déjà vu mixed with panic and dread,” he said. Soon after starting a new job, he had a seizure at his desk. Scans revealed a mass on the right side of his brain. He underwent brain surgery, and a few days later was diagnosed with grade 4 glioblastoma.
“There is no good brain tumor,” Stewart said. “But the one that we didn’t want to hear was grade four glioblastoma.”
Shortly after his diagnosis, Stewart and his wife entered a radio contest for a dream wedding. “I woke up one morning, I opened my computer kind of like this, and with a giant swollen head and 35 staples, I kind of just said what was going on.”
They won the contest and were married nine days later under the 12th Street Bridge in Kansas City. The story caught media attention and connected Stewart to the nonprofit Head for the Cure.
“I started going to their traditional 5Ks and stuff. I thought that was really cool and started following the company,” Stewart said.
He began sharing more of his experience publicly. “Selfishly, people think that I started sharing my story because I wanted to help people, and it’s just what that transformed into.”
“At this point, I had been told that I’ve got like 11 to 18 months tops to live,” he said. When he finally asked his mother if she believed that, she replied, “They do,” referring to the doctors. “That’s all I really needed to know.”
That motivation led Stewart to stay active, returning to skateboarding despite the risks. “I’m not gonna lie, it’s very scary now. I’ve got a little like plastic plate in my head. I have to skate in a helmet. If I take a fall, it’s a lot different than when I took a fall before.”
To hold himself accountable and rebuild confidence, Stewart began posting a “cancer trick of the day” video to Instagram. “I would be riding my motorcycle. I would be skateboarding. I would be working in the garage… I was just trying to focus on the one thing that mattered the most, which was I’m still here. I can still do the things.”
Stewart’s longtime friend, filmmaker Ryan Lovell, suggested they work on a short film together. The project grew into a 13-minute documentary called Rare Enough.
“We released the documentary at a theater here. We sold it out… Then we released it to the public and we ended up like winning a film festival, getting flown out, getting to do all this amazing, cool stuff.”
The film caught the attention of skateboarding legend Tony Hawk. “Tony Hawk called me,” Stewart said. “He said, ‘Hey man, I love the film. I love your story.” Hawk invited Stewart and his wife to stay with him and appear on his podcast.
After the film’s release, Stewart and his wife sold their house, bought an RV, and spent two years traveling to brain cancer awareness events around the country. “We met literally thousands and thousands of patients, caregivers, doctors, advocates.”
The name Rare Enough was born from a phrase Stewart said in one of his early videos. “Maybe if I’m rare enough to get it, I’m rare enough to beat it.”
“I’m not actually special,” he said. “If I’m rare enough, you are. And that’s kind of been the message ever since then.”
Eventually, Stewart connected with Dub Warner of Timeless. “One of my old friends here in Kansas City, this guy right to my side… approached me, almost the same kind of deal that Ryan Lovell did. He was like, ‘Man, I’ve loved your story. I’ve loved following it. I’ve got this really cool project that I think we could work together on.'”
Together with Timeless, they launched the Shred for the Cure campaign, blending Stewart’s skateboarding roots with fundraising for Head for the Cure.
“Over the past three years, we have done four or five skateboarding events. We have put on all kinds of different fundraisers all over the country,” Stewart said. “Timeless has made countless products that have all benefited Head for the Cure. I mean, 60-plus thousand dollars I think have been raised.”
Those funds go directly to patients, hospitals, and research. “I can trace every one of them into why they matter.”
The campaign is now entering its third year, with custom boards and accessories designed by artist John Malta.
“To have my loud ass somehow turn into the spokesman for this is an unreal honor,” Stewart said.
