Dena Sherwood, mother to a neuroblastoma survivor and Founder of Arms Wide Open Childhood Cancer Foundation, discusses her organization and the CureFest event.
Neuroblastoma is a rare childhood cancer, but it is the most common extracranial solid tumor in children. It is a neuroendocrine tumor that originates in neuroblasts or neural crest progenitor cells. It often appears initially in the adrenal glands, but tumors can be found virtually anywhere in the sympathetic nervous system. Its presentation is highly variable, ranging from a relatively benign palpable tumor to high risk, aggressively metastatic disease.
Ms. Sherwood describes the long diagnostic journey children with neuroblastoma often go through, including struggles with misdiagnosis caused by the heterogeneity of symptoms and presentations. While the majority of patients with neuroblastoma get diagnosed at stage 4, proper monitoring and testing could diagnose and treat these patients earlier. She highlights the importance of physicians digging deeper into patients who return with recurring and/or worsening symptoms.
Her advice to newly diagnosed families is to not rush decisions following diagnosis, stressing the importance of doing research on the best possible treatment options, physicians, and cancer centers. She also wants families to know that there is always hope and to not compare their child’s circumstance and diagnosis with anyone else’s, especially in a disease that is so individualized.
While on the neuroblastoma fight with her son, Ms. Sherwood and her family founded the Arms Wide Open Childhood Cancer Foundation. The organization provides financial and emotional support for families at any stage of the childhood cancer journey. Some of their programs include funding of research and clinical trials, bereavement retreats, survivor retreats, and CureFest.
CureFest is an annual, three-day event that takes place in Washington, DC and is open to families and patients affected by childhood cancer. The goal of CureFest is to raise awareness, build community, and have lawmakers, clinicians, researchers, and families come together in support of the childhood cancer community and amplify their voices.
This year’s CureFest will be held September 18-20, 2026. For more information, visit https://www.curefestusa.org/.
For more information on neuroblastoma, visit https://checkrare.com/neuroblastoma/