Ed note: the following article can be found in the forthcoming NF News, the newsletter of the Children’s Tumor Foundation, if you’d like to be added to our mailing list please contact ggleeson@ctf.org.
Jack Burke wants to be the busiest man in the world. That may seem like a tall order for a six-year-old but it doesn’t deter this NF Hero whose desired future professions range from doctor to actor.
Despite his audacious ambitions and upbeat attitude Jack hasn’t had the easiest early years. Diagnosed with NF1 at two-years old due to café-au-lait spots and vision difficulties it was later discovered that Jack had a plexiform neurofibroma on his left eye orbit. Jack’s parents, Beth and Jake, have him monitored regularly by physicians and work hard to ensure he receives the very best care. But they’ve also taken to building the NF community in their hometown of Atlanta and raising funds for research.
“When we first got the diagnosis we didn’t know what to expect,” said Beth. “We kept it close to our vest and didn’t tell a lot of people. Then we realized the only way we could cure our hopelessness and helplessness was to do something about it.”
Beth contacted Stephanie Yolish at the Foundation and the two began planning a symposium at Children’s Hospital of Atlanta. They invited Dr. Bruce Korf and sent a mass email to area families affected by NF. More than 100 people gathered for what
was an eye-opening experience, both in terms of what was learned and in terms of how vast the community was.
“We were shocked at the response rate,” said Beth. “People were craving information and collective action. That day we started
building toward a more cohesive group.”
The symposium also motivated the Burkes to push forward with their fundraising activities. They signed-up Jack to be a Racing4Research NF Hero as a way to introduce him to NF and some of the others who live with the disorder, and to also give them a chance to raise money for research. Over the course of 2010 they hosted events and shared Jack’s story with friends and family.
“The response was amazing,” Jake said. “We learned that a lot of people are just looking to be asked to help.”
In total the Burkes raised more than $15,000 toward Jack’s NF Hero campaign and then they joined the Foundation in Daytona at the Rolex 24 where Jack had a chance to meet many other kids affected by NF.
“It was amazing on several levels,” said Jake of the R4R experience. “It was a great way to introduce Jack to a life of NF in a very positive and hopeful way. The empowerment that he got, when he stood in front of a room of 200 people and spoke into a microphone – it was a huge step.”
The experience also gave Jack the opportunity to practice his craft. Prior to the race each NF Hero gets to sign the #4 Children’s Tumor Foundation car and sit in the drivers seat for a photo op. The event draws a large media gathering with reporters and t.v. news crews wanting to get in on the action. Jack felt the experience was just like being a movie star, “there was nothing around me but cameras,” he said.
The Foundation is hopeful that he won’t be too busy to join us at the track again next year.
