‘Terrible things happen with a cancer diagnosis, but also beauty’

By most accounts, Sophie Steiner was a unique young woman. Described by her mother as “quirky,” Sophie was artistically inclined and felt like she didn’t always fit in with her peers.

Sophie died four years ago of cancer at the age of 15.

So it seems fitting that the foundation named in her honor – which helps young cancer patients like Sophie – doesn’t raise money with black-tie galas or 5k runs. Instead, rock concerts have made the difference. Those shows – known as Be Loud! ’17 – are this weekend at the Cat’s Cradle in Carrboro.

By any measure, the Be Loud! Sophie Foundation has been a solid success. It has raised about $747,000 since the organization was founded in 2014. A good chunk of those funds come from the annual benefit shows.

The foundation, created by Lucy and Niklaus Steiner, Sophie’s parents, has funded cancer research and the development of age-appropriate programming. Notably, it also pays the salary of a program director at the UNC Lineberger Comprehensive Cancer Center, who works with those in their early teens to mid-20s going through cancer treatments.

“We donate $100,000 a year from the foundation,” Lucy Steiner said. “And that covers Lauren’s salary, and a lot of programming.”

Lauren is Lauren Lux, who has occupied the foundation-funded position since fall 2015. Her hiring was a major accomplishment.

She is primarily a social worker, lending assistance and moral support to patients and families. That involves everything from planning outings and delivering pep talks to sometimes attending funerals.

“Sometimes I describe my job by telling people, ‘I’m here to make this suck a little less,’ ” said Lux, 33. “It’s not fun. But the whole team – me, the oncologists, nursing staff, psychologists, child-life specialists – are here to walk people through this and get them through it as best we can.”

‘Be loud ... Have no fear’

The inspiration for the foundation – and its name – goes back to Sophie’s struggle with germ-cell cancer, which started in the fall of 2012 and ended Aug. 30, 2013. Over the course of treatment, Sophie, a student at East Chapel Hill High, her parents and her two siblings, Elsa and Annabel, discovered that there was a lot more support and cancer research for younger children than teens and young adults. Filling that gap is a need that groups like the British-based Teenage Cancer Trust attempt to address.

Here, the Steiners created the Be Loud! Sophie Foundation, following their daughter’s wish to help teens and young adults and their families who might be going through the same thing she did.

The Steiners took the name from a poem their daughter wrote on her blog when she was 13, just a few months before her diagnosis.

… Be loud

And move with grace

Explode with light

Have no fear …

The first Be Loud! show happened in 2014 and featured a rare reunion show by Let’s Active, the Winston-Salem underground-pop band that had been one of the leading lights of the 1980s college-radio generation. This year’s model features Georgia rock band Drivin’ N’ Cryin’ along with historically significant Triangle bands, including Hege V, Backsliders and Floating Children.

“The concert takes in $35,000 to $45,000 every year, but the rest of it is $100 or $50 checks, or money from lemonade stands or bake sales that people send in,” Lux said “For the most part, the money comes from normal people rather than a few big donors.”

A lasting legacy

At UNC, Lux works to coordinate patients’ treatment schedules with spirit-raising extracurricular activities appropriate for a range of age and maturity levels.

“It’s hard, but I love it,” Lux said. “My mom had cancer when I was growing up, so I saw firsthand the impact health care providers have on families going through this. Also, I love my patients.

“This age group is just the best,” Lux continued. “They are creative and inspiring and authentic and brutally honest. It’s a privilege and honor to walk with people through the hardest time in their life, and see how phenomenal they are even when their lives might be shattering.”

The Steiners have ambitious long-term plans: a capital campaign to fund an endowment. Their fundraising goal is $2.5 million over the next five years, to establish the foundation as a permanent legacy of their daughter’s life.

In the meantime, they have become close with Lux, whose job came as a result of somewhat unusual circumstances.

“She uses a phrase, ‘collateral damage and collateral beauty,’ ” Lucy Steiner said. “Terrible things happen with a cancer diagnosis, but also beauty. Since the moment of Sophie’s cancer diagnosis, it’s been a pairing of the most tragic sad things with the most amazing beautiful things you wouldn’t predict. We’re always sad and miss Sophie all the time. But it’s also amazing to see that her life led to this.”

This story was originally published August 24, 2017 at 5:58 PM.