About Be Loud! Sophie Foundation:
Be Loud! Sophie Foundation was founded in honor of Sophie Steiner, who was diagnosed with germ-cell cancer in November 2012, and died nine months later at age 15. But Sophie’s story did not end there. Before she died, she expressed her strong desire to help other adolescents and young adults diagnosed with cancer. She wanted to create something entirely new: Support programs specifically designed to help patients her age hold on to their identity in the face of overwhelming illness.
How are donations to BE Loud! Sophie used:
Fund A New Youth Support Liaison Position.
Modeled on a successful initiative in the U.K. (Teen Cancer Trust), a Youth Support Liaison would provide non-clinical care to adolescent and young adult cancer patients. This care would take a variety of forms, all designed to respond to a patient’s individual needs:
- One-on-one support. A youth liaison would spend time with adolescents and young adults during long hospital stays and in the outpatient clinic—socializing with them, checking in with how they are handling treatment, and joining them in activities they enjoy.
- Provide access to complementary medical approaches. The youth liaison would help arrange for adolescents and young adults to have access to complementary medical approaches that they are interested in—activities such as massage, yoga, acupuncture, and meditation.
- Support individual patients’ unique interests. Maintaining one’s interests and identity during treatment is a particular challenge. The youth liaison would gather information about each patient’s individual interests when they are first diagnosed, and then support them in pursuing their interests throughout treatment.
- Support research efforts. The youth liaison would follow research protocols designed to collect data on the impact that various age-appropriate resources and non-clinical supports have on the adolescent and young adult patient experience.
Provide Funding For Complementary Medicine and Individualized Programming
Complementary approaches such as massage, yoga, acupuncture, and meditation address not only physical well-being, but also offer a holistic approach that can significantly improve patients’ quality of life by supporting their emotional needs. The foundation will provide funding for complementary medicine in cases where a patient’s insurance does not cover integrative medical services.
The foundation will also fund programming activities designed to meet the individualized needs of AYA cancer patients. For a dancer, this might mean a modified dance class in the hospital. For a musician, it might mean regularly connecting with a UNC student who plays the same instrument. The foundation also hopes to fund events such as regular Friends’ Nights, when patients could invite their friends to visit. Funds would pay for friends’ transportation, parking, and entertainment. Funds could also be used to maintain a supply of age-appropriate room decor—lamps, posters, bedspreads, and other decorative elements—allowing patients to personalize their room to fit their taste and interests.