How a grieving mom created a pediatric cancer nonprofit
Diane Restaino founded the Joedance Film Festival in 2010 in honor of her son's wishes to improve pediatric cancer treatment; 'It was his legacy, and we were just the people that got it done for him'
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Q&A: Diane Restaino created the Joedance Film Festival soon after her son’s death in 2010, and she discusses why after 13 years she decided it was time to bring it to an end
Diane Restaino’s son Joe was 16 when he was diagnosed with osteosarcoma, a rare and aggressive bone cancer. Shortly before he died in 2010 at the age of 20, he asked his mother to honor his memory by raising money for three things: to fund a clinical trial, to create an internship program for college students and to find a way to be part of pediatric cancer research every day.
After Joe’s death, Diane quickly got to work creating the Joedance Film Festival (named after the Sundance Film Festival), which over the last 13 years grew into a well-known screening festival for filmmakers. The non-profit raised more than $400,000 for Atrium Health Levine Children’s pediatric cancer program.
Restaino and the Joedance board announced in December 2022 that they were ending the film festival, although people can still donate to the Joedance Pediatric Cancer Fund through the Atrium Health Foundation.
Restaino recently sat down with Ledger managing editor Cristina Bolling in an episode of the Charlotte Ledger Podcast to talk about the experience of creating a nonprofit in honor of a child, and how she decided it was time to end the festival. This Q&A is an edited excerpt of their conversation.
Q: Tell us about Joe’s story and what motivated you to start Joedance.
Joedance started with a conversation that Joe and I had very early one morning. He said, “You know, Mom, I’d like you to do something in Charlotte. I’d like you to raise money. I’m not asking you to find a cure. I just want to find better treatments with better outcomes.” Joe had osteosarcoma, which is a very rare, hard disease. The treatments are harsh.
He gave me a list of what he wanted me to accomplish. On that list was a clinical trial, which we have done. He wanted to establish an internship program for college students, which we have established. He wanted to be part of research every day, and the way we approached that is that we funded a Level 3 research technician in the pediatric cancer lab — we funded his salary for two years. We checked everything off, and he’s made a difference in kids’ lives.
Q: Why did you decide on creating a film festival to raise money? And how quickly did Joe’s request become your marching orders?
Joedance started eight months after he passed away. He said, “I don’t want you to do a 5K, a gala or a luncheon. I don’t want you to tell anybody else’s story. I want you to tell my story.”
We did a film festival because that's what our family did together — we went to the movies. If you've ever lived in Dallas, Texas, in the summer, it is so hot. There was a movie theater that played kids’ movies once or twice a week. And then when [my three sons] got a little bit older, we started a tradition of going to the movies on New Year’s Eve.
[The idea to raise money through a film festival] just kind of grew out of an event that we were already doing in the courtyard of our Fourth Ward townhome. We were showing films on the side of our townhome for everybody that lived there. We were just sitting in my living room with our neighbor and I said, “This is what we should do.”
People have said that to me: “This was probably a way for you to grieve.” It was not a channel for me to grieve. It was very purposeful, and I have never sat down quietly in 13 years to grieve. My grieving starts today. It was more of a purpose for me. And more of a promise that I made to Joe than a channel to grieve.
Q: How do you set out to build a nonprofit when you didn’t come from a nonprofit background?
I had a lot of people that I could lean on for advice. I talked to people at Atrium Health a lot. I made that promise to Joe, and I was just gonna figure it out. We didn’t file for a 501(c)(3) until 2012. Then we found a festival director. I guess I knew that there was something there because the first year we donated $960, then it was $1,978, and then it was $2,800. And I could see the money going up, and I’m thinking, “Oh, maybe we have something pretty unique here.” In 2013, we donated $25,000. So when we hit that, I was like, “Yeah, we’ve got something pretty unique.”
Q: What led you to decide to end the festival? How did you know it was time?
It wasn’t a decision I entered into lightly. It took me several years to get to this point. Two years ago, we had checked everything off of Joe’s list, and we had a good amount of money in the pediatric cancer fund. I set a goal that I wanted to leave at least $300,000 in that pediatric cancer fund, because I knew that would last for a good while.
I also knew that there was going to be a certain time period for Joedance, because it was not open-ended. It was: These are our goals, this is what we need to accomplish. We did that. So I knew it was going to end at some point, and I just think everything pointed to this year.
This was never about anybody else. This was always about Joe’s story, and this was always about Joe’s list. It was his legacy, and we were just the people that got it done for him. I think if he had lived, he would’ve done it himself.
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Executive editor: Tony Mecia; Managing editor: Cristina Bolling; Staff writer: Lindsey Banks; Contributing editor: Tim Whitmire, CXN Advisory; Contributing photographer/videographer: Kevin Young, The 5 and 2 Project