Sophie Steiner loved all things Chapel Hill, especially the music scene. She also was passionate about improving cancer care and services for adolescents and young adults. For the past five years, her family and the Be Loud! Sophie Foundation have honored her legacy as a champion for other young people with cancer.

Diagnosed with a germ cell tumor in 2012 when she was in ninth grade, Sophie received her care at the N.C. Cancer Hospital and UNC Children’s and quickly realized she felt out of place with pediatric cancer patients and adult patients. Plus, some supportive care services, such as yoga, meditation and massage, were only offered to adult patients in the cancer hospital.

Before she passed away in August, 2013, Sophie, 15, asked her parents, Niklaus and Lucy, and her sisters, Elsa and Annabel, to help address the care and support shortcomings adolescents and young adults – ages 13 to 39 – can experience during cancer treatment.

Be Loud Sophie Foundation concert, a fundraiser that supports the AYA Program at UNC Lineberger
Foundation board member Eric Montross (left) with UNC Lineberger Comprehensive Cancer Center’s AYA Social Worker Catherine Swift, AYA Medical Director Andrew “Smitty” Smitherman, MD, AYA Program Director Lauren Lux, LCSW, Lucy Steiner, Annabel Steiner, Niklaus Steiner, and master of ceremonies Billy Barefoot.

Be Loud! Sophie Foundation

This heartfelt request, and the nearly $70,000 in donations made in Sophie’s memory, led to the establishment of the Be Loud! Sophie Foundation in 2014. The foundation’s vision and support led to a partnership with UNC Lineberger to create the cancer center’s Adolescent and Young Adult (AYA) Cancer Program in 2015.

The foundation, which has since raised more than $1.2 million, continues to provide support for the program’s annual cost and is also focused on funding a permanent endowment with UNC Lineberger for the AYA program.

This summer, the foundation made a $225,000 donation to the endowment. Combined with the foundation’s earlier contributions, and with a key assist from the Eric Montross Father’s Day Basketball Camp, the total market value is now nearly $750,000. Be Loud! Sophie and UNC Lineberger share a goal to build the endowment to $2.5 million.

Niklaus Steiner believes the authenticity of the foundation’s goals, messages and mission have enabled it to generate steadfast community support and raise an extraordinary amount of money in only a handful of years.

“From the very beginning, everything we did needed to reflect the spirit of Sophie and what she believed in, and it was natural for us to rally around the idea of community and music,” he said. “We also have stayed super focused. This has always been about UNC, about cancer and about the AYA population.”

Lucy Steiner said Be Loud! Sophie’s fundraising success is directly tied to people’s pride in UNC Chapel Hill and North Carolina.

“So many of our donors went to UNC or are affiliated with the university in some way,” she said.

“There is a sense of ‘what do we do well here? We grow young people.’ We launch them in to this world, and there is something really compelling thinking about someone whose life has been interrupted by a cancer diagnosis.”

Adolescent and Young Adult (AYA) Cancer Program

Lauren Lux, LCSW, Adolescent and Young Adult Program Director
Lauren Lux, LCSW, Adolescent and Young Adult Program Director

Lauren Lux, LCSW, director the AYA program, said the foundation’s decision to invest in people sets it apart from other organizations. “They are willing to fund people, and not many people or organizations are that excited about that, but the people are the real backbone of what we’re able to do,” said Lux, whose salary is funded by Be Loud!

UNC Lineberger also has made significant investments, including recruiting Andrew Smitherman, MD, MSc, to be the AYA program’s medical director. In addition to caring for AYA patients, Smitherman is studying survivorship care and care outcomes.

“Learning more about the long-term effects of cancer therapy, and cancer itself, on survivors is critical, especially these young people as they are transitioning from active treatment to survivorship,” Smitherman said. “We want to be sure we address what they need to live happy, healthy lives moving forward and, at the same time, we want to investigate ways to identify, or risk stratify, patients who will need more support during that transition.”

The foundation’s support builds on UNC Lineberger’s significant investments in the program, including providing funds for staff, educational outreach and research. Social worker Catherine Swift, MSW, recently joined the staff, which will allow Lux to dedicate time to statewide and national outreach. There is also an initiative to promote participation in clinical trials. Young adults historically have been underrepresented in clinical research, and increasing enrollment numbers could lead to advances in care.

Smitherman and Lux also are working with other providers to improve care for AYA patients across North Carolina. Using Be Loud! Sophie funding, UNC Lineberger, Wake Forest Baptist Health Comprehensive Cancer Center and Duke Cancer Institute host an annual statewide symposium that brings together clinicians and researchers who are interested in improving care for the AYA population.

Niklaus and Lucy Steiner said, looking ahead, making the cancer center’s AYA program a resource for all residents of North Carolina, including members of the military who are based in the state, is a priority for the foundation.

“This isn’t a nice-to-have service,” said Niklaus Steiner. “It’s important, and it’s essential to improving the care. The foundation has invested in this program. UNC has invested in the program. We now need more donors to invest in it as well.”