WNCN, the local CBS affiliate, ran this thoughtful piece about our foundation. And here’s the full transcript, with special thanks to Maggie Newland for airing our story:
CHAPEL HILL, N.C. (WNCN) – The years between 13 and 30 can be a tough time of transition for anyone.
But add in a cancer diagnosis and young people can really feel alone.
Now there’s a program at UNC Hospitals working to change that.
A program that started with a young woman who wasn’t afraid to speak out.
When Sophie Steiner was in seventh grade, she wrote a poem called “Be Loud.”
The words of the poem are:
And move with grace
Explode with light
Have no fear
Sophie lived by those words.
“Sophie was loud,” her mother, Lucy Steiner explained. “She was loud, and she spoke her mind, and she was direct.”
When Sophie was in ninth grade and started cancer treatment at UNC Children’s Hospital, she didn’t hesitate to speak up when something bothered her.
“She did realize early on in her stay that a children’s hospital is for children,” recalled her father, Niklaus Steiner. “She would walk the halls of the fifth floor of the children’s hospital and she would notice when there were teenagers in other rooms they were often alone and watching TV.”
She saw a need for more support for teenagers and young adults fighting cancer.
After her death, Sophie’s family created the Be Loud! Sophie Foundation in her memory.
Money raised now funds the Adolescent and Young Adult cancer support program at UNC.
“When you’re a 14-year-old and you’re treated in a pediatric hospital you don’t quite fit in,” said Lauren Lux who heads the AYA program. “Similarly, when you’re 28 and you’re treated in an adult hospital surrounded by people much older that you, you don’t quite fit in.”
Lux now sees every newly diagnosed cancer patient at UNC between the ages of 13 and 30, both those at the Children’s Hospital and Lineberger Comprehensive Cancer Center.
“One of my goals as a program director is that cancer becomes part of their story and not their whole story. I can’t erase it we can’t make it go away. I hope I can make it suck a little bit less,” she said.
Jesse Sorrell, who was diagnosed with melanoma for the second time at 28 said it helps to have Lux’s support.
“She and I just started to meet and get to know each other as people rather than patient and care provider first,” he explained.
The program also offers activities like a photography project, a rock climbing trip and pizza nights, so young adults with cancer can get to know others dealing with similar struggles in a setting that isn’t focused on their illness.
“I do feel this is what’s made me feel more connected and less isolated this diagnosis compared to the first one,” said Sorrell.
The Be Loud! Sophie Foundation also funds research into how to best treat cancer in teens and young adults.
Lux says that’s extremely important because that is an age group for which the cure rate has not improved over the last several decades.