Mark Derewicz, a writer for UNC Healthcare, has written a remarkably moving article about Sophie and our foundation in UNC’s alumni magazine. Below, he describes the beginnings of our work.
On her 15th birthday, a bunch of UNC field hockey players surprised Sophie with home and away jerseys with Sophie’s name on the backs. Sophie was overjoyed. The players came to Sophie’s bedside in response to a request from UNC alum Mackenzie Thomas, who was friends with one of the players and also happened to be a former student of Sophie’s father, Niklaus Steiner. Sophie instantly realized that not many kids in the cancer ward experienced visits like. And her question was very simple, “why not?”
The Steiner family could do so much for Sophie because they know so many people in Chapel Hill and at the university after living here for decades. But what about the 16-year-old from Fayetteville whose parents can’t take off work, don’t know anyone in Chapel Hill, and can’t get friends or coaches or teachers to visit? What if that kid is shy, unlike Sophie, and doesn’t think to ask for what might help?
And, truth is, despite the Steiners’ community connections, there were things they couldn’t do for Sophie that would have helped her.
For instance, Sophie had more visitors than other patients, but she still was bored. One thing that might have helped was getting to know other patients like her. Yet, because of HIPAA regulations, doctors and nurses couldn’t let Sophie know that down the hall there was a patient they thought she would like to meet.
Also, sometimes teens feel trapped in hospital rooms with televisions and cell phones, too little of the stuff that makes life truly rich – people, inspiration, love, laughter, and the things we cherish but too often can’t experience during month-long stretches in the hospital.
More than that, Sophie saw hospital workers wheel in carts full of games and puzzles, coloring books and toy fire trucks – stuff young kids love but teens probably find annoying. Sophie saw this disconnect between younger and older pediatric patients as an opportunity.
And so Sophie asked her parents – Niklaus and Lucy Steiner – if they could do something to help other older kids who didn’t have the incredible support system of family and friends throughout UNC and Chapel Hill. Not long after this request, within a year of her cancer diagnosis, Sophie died. At the end of Sophie’s obituary was this sentence: “In lieu of flowers, please consider making a donation to the Sophie Steiner Fund.”
The Steiner family didn’t really know what that fund would be. They thought maybe they’d raise $5,000 or $10,000 and buy gas cards for parents down east who had to travel so far to the hospital. But within a few weeks, donations topped $10,000 and within a few months the Sophie Fund neared $70,000. That’s when the Steiners thought this wouldn’t be just a little fund. They realized they could start a foundation that could make systemic changes to the way we as a society support teen and young adult cancer patients.”
The family named it The Be Loud! Sophie Foundation, after a few lines from one of her poems she wrote before she got sick:
And move with grace
Explode with light
Have no fear . . .”
The foundation’s first event was showing Sophie’s favorite documentary, Hava Nagila, which was co-produced by her namesake and family friend Sophie Sartain. The night at the Varsity Theatre on Franklin Street raised $5,000.
Soon, The Be Loud! Sophie Foundation had nearly $100,000 in its coffers.
The Steiner family thought about what Sophie would want them to do with the funds. And that’s when they realized they could spearhead the creation of an advocate position at the hospital, someone who could befriend teens and young adults and help them navigate incredibly difficult situations.
They then looked at other hospitals to find a model for this position. But none existed, not for this particular age group of 13-26 adolescent and young adults (AYA).
Two of Sophie’s doctors, Stuart Gold and Ian Davis, immediately saw the potential benefit, and Gold suggested that the Steiner’s meet with Don Rosenstein, a professor of psychiatry who had been recruited to UNC to transform the hospital’s cancer support efforts.
Rosenstein liked the Steiners immediately and thought their idea was a good one. But he also knew his group was already so busy and stretched too thin. Yet, the more he met with the Steiners, the more impressed he became with the idea that such a new AYA position really would fill a big gap in cancer support services.
The problem was money.
The UNC Lineberger Comprehensive Cancer Center support program already offers so many things – yoga, massage, acupuncture, mental health care, survivorship programs, pain and side effect management. Nearly all of it loses money for the hospital. So, the Steiners resolved to raise the money through their foundation. They formed a board of directors and had a simple goal: raise money to fund a new AYA position at the hospital.
That’s when the Carolina and Chapel Hill communities rallied.
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Niklaus recruited old high school pal Steve Balcom and college pal Lane Wurster, who together own the Carrboro graphic design firm The Splinter Group. Niklaus asked them for a favor – to design a logo that would become the public face of The Be Loud! Sophie Foundation.
Steve and Lane didn’t hesitate. In fact, they also created a website, T-shirts, posters, postcards, letterhead, and many other promotional materials all free of charge. And Steve joined the board of directors.
Niklaus and Lucy then wondered how Sophie would like them to raise money. Music, they thought. Community. Friends. Celebrations.
Niklaus reunited with friends from high school and college, including Rob Ladd and John Plymale from the ’80s band The Pressure Boys. They got the band back together for a benefit concert, and once the Pressure Boys signed on, word spread and other bands from the Golden Age of Chapel Hill’s music scene agreed to play, including the Connells and the Dexter Romweber Duo. They even got Mitch Easter and Sara Romweber to reform Let’s Active, which hadn’t performed for 25 years. Amazingly, all these bands played for free.
Frank Heath, owner of the Cat’s Cradle who knew Niklaus from high school, offered the Cradle free of charge for two weekend nights in August 2014 near the one-year anniversary of Sophie’s passing. They called it Be Loud ’14.
Both nights sold out, and the foundation raised $45,000. Sophie, everyone knew, would’ve loved the show.
The Steiners turned Sophie’s bedroom into the foundation headquarters with a few remembrances – an orange wall she painted, a few favorite books, photographs, and a quote from Albus Dumbledore: “Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.”
To help with fundraising, many friends (and some strangers) put together a string of smaller benefits – relay races, bake sales, dance performances, parties, student concerts.
In June 2015, the foundation hosted a dinner concert at the Barn at Fearrington, thanks in part to Keebe Fitch, manager and event coordinator at Fearrington. Tift Merritt and Don Dixon joined the Red Clay Ramblers, a band that includes Chris Frank, Anabel Steiner’s godfather. This Hootenanny raised another $35,000.
Throughout the summer, seven local Boy Scouts biked 4,000 miles across the entire country to honor Sophie and raise over $40,000 for the foundation. They called their adventure Bike Loud!.
With plenty of capital to work with, Niklaus and Lucy met with Rosenstein who told them he was ready to push the AYA position through human resources. To spur on the process, the Be Loud! Sophie Foundation donated $100,000 to the UNC Lineberger Comprehensive Cancer Center to begin paying for the salary and programming costs of this position.
As they planned for the second annual Be Loud! Sophie Foundation benefit concert at the Cat’s Cradle, UNC posted the position. Rosenstein was amazed to receive over 80 applicants – most of them mentioning The Be Loud! Sophie Foundation in their cover letters. He, Stuart Gold, Ian Davis and others began interviewing the remarkably strong pool.
Be Loud’ 15 took over the Cat’s Cradle on the weekend of August 28-29, 2015. In the audience was a young woman named Lauren Lux. The Steiners invited her on stage and introduced her as the new Adolescent and Young Adult Program Director; fifteen days prior, Don Rosenstein had offered her the job and she immediately accepted.
Lauren, 32, is a licensed clinical social worker from St Louis. She played basketball as an undergraduate at Webster University, then earned her master’s in social work from the University of Chicago. She became a pediatric oncology social worker at the University of Illinois-Chicago for three years before moving to work at Duke Hospital, and then at the Center for Child and Family Health in Durham. She lives in Durham with her husband and young daughter—and despite being an avid Duke fan, is putting aside partisan fandom for this amazing opportunity at UNC.
Lauren started in early October, 2015. Her first goal was to get to know patients and work to make their personal experiences better. She is working closely with cancer support staffers who already help AYA patients. She is building relationships throughout the hospital. She is assessing the needs of patients, family, and staff, and through that assessment she is developing a variety of programs, trainings, individual supports, and research to help advance the care of AYA patients.
Two years after Sophie’s death, the Steiners fulfilled the first major goal of the foundation they started in her honor: hiring a AYA Program Director. But they’re not finished. Far from it. Together with UNC, they now have the chance to build a research-based program that advances the national understanding of how best to meet the unique needs of patients in this diverse age group—the 13-year-old dancer, the 19-year-old college student, and the 24-year-old soldier. The foundation is committed to continue funding this position for the foreseeable future and to make it a national model for other hospitals. Stay tuned!