Justin Spoon at McCormick’s Creek State Park.
A local non-profit that seeks to improve treatment options for those with childhood cancer is putting on a benefit concert next month.
Elevate Childhood Cancer Research and Advocacy is hosting “Elevate the Stage” on Nov. 2 at Factory 12 Event Loft from 6 to 11 p.m. It will feature young regional talent and raise money to continue the non-profit’s mission of “let kids be kids.”
“It’s almost like a music festival, except for inside,” CEO and Founder Robyn Spoon said.
Spoon’s son Justin died of rhabdomyosarcoma, a type of childhood cancer, soon after his 24th birthday in 2023.
Spoon had been involved in nonprofit work previously and wanted to join an existing one related to childhood cancer to carry on her son’s memory and support families and patients in the midst of their cancer diagnosis.
“But once I started to really dig into the challenges, we started to notice there was this niche area that was missing and that was what we really wanted to tackle,” she said.
While some similar non-profits do things like raising money to donate for research or raising money to help with family support, Spoon considers Elevate to be a “connect the dots organization.”
“We’re a capacity builder — that’s kind of ambiguous sounding, but basically what we’ve learned is that trying to bring about new therapies means increasing the number of clinical trials. To get a new therapy, you need more clinical trials for children. How do we make that happen?”
Doing so means to help “connect the dots” between what Spoon said are nine major stakeholders who can have impact in the area of childhood cancer.
Some of those include pharmaceutical companies, academic researchers, advocacy organizations, the FDA and policymakers.
“They all have a role and they all tend to live in these little silos,” Spoon said. “We stand in the center of that and bring those parties together.”
Justin Spoon had competed as a Columbus North Bulldog in cross country before going on to become a nationally competitive collegiate cross country runner at Asbury University.
But he also had a passion for music and performance, which is how the idea for Elevate the Stage came together.
“Really what we want for all kids and all young people is a chance to thrive,” Spoon said. “And one of the ways we can do that is we can support young people who are trying to start businesses and young people who are trying to become artists and musicians and things like that.”
Justin’s brother Ryan, who is currently finishing up his degree at IU, recruited a number of artists for the event, and will be performing “I Wish,” a song he wrote while processing the death of his brother.
Sets lasting about 20 to 30 minutes each will feature Columbus native Parker Ballard, Indy folk artist Draken Asher, Billboard Top 40 artist Piper Madison and pop-rock artist Mackenzie Wilmoth.
Other performers include Columbus East graduates The Lucid Lilacs and Bloomington-based Dose Rose. Food trucks from Theo’s Brunchfest and Antojitos Rosita will be there, along with treats from Caypops.
Tickets and information about the event can be found at elevate.crowdchange.co/41752 or on its Facebook page called “Elevate the Stage — A Benefit Concert.”
Elevate’s mission is a response to the way childhood cancer and those fighting it are often portrayed in stories in the media, Spoon said, adding there are typically two types of stories.
“One of them — a kid develops cancer, a kid fights the good fight, a kid becomes a major, amazing advocate, it tells their story, they die, but look at the legacy that they’ve left.”
“The other possibility is, a kid gets cancer, the family gets all involved, the kid has these treatments, but look, the kid survived.”
The reality is often much more complicated, Spoon said.
“What we have found is that kids have been asked to be something they didn’t sign up for,” she said.
“Some of these kids that we encounter really want to be involved in making those differences. Good for them, they should have every right to be part of making those changes. But we believe that they should also have another choice — which is to just go about living their life as kids, while the rest of us that feel called to do so fight on behalf of them.”
That sentiment was embodied in something that Justin had wrote.
“My son, he wrote a little thing on his phone after he relapsed that second time, he said, ‘People call me a warrior. I’m really a peasant with a pitchfork in a war I didn’t choose to fight.’ And he was a tough guy, and so that is saying, please don’t impose that on me, please don’t do that. I’m just trying to live my life over here. The reason he referenced the pitchfork is because that’s how he viewed the archaic drugs that they were giving him.”
“What we are trying to say is, maybe the scientists and the drug makers, maybe they should be our heroes, and maybe we should ask them to be the heroes in this story,” she said.
