by Dr. Robin McGee, CKN Editor, Survivor, Advocate

“Is telling your story advocacy?” – it is a question we have raised before in this CKN Patient Advocacy Blog. This question has prompted a series of blogs profiling organizations that promote sharing one’s cancer narrative as a way to improve care for others.

Blue Faery: The Adrienne Wilson Liver Cancer Association is a nonprofit corporation whose mission is to prevent, treat and cure primary liver cancer, specifically Hepatocellular Carcinoma (HCC), through research, education, and advocacy. The founder is Andrea J. Wilson, and, like many patient advocates, she has her own story. Andrea was only 22 when she became the legal guardian of her 8-year-old sister Adrienne. She navigated the joys and challenges of being both sister and parent to her beloved Adrienne who called her “Sissy.”

But when Adrienne was diagnosed with HCC at 15, they both were catapulted into the foreign and confusing world of cancer. Andrea was shocked by how little information they were given, how limited the treatment options were, and how scarce patient support resources were. “We had no access to anything,” she remembers, “records, information, support – we were on our own.”