The best advocates are the ones who can speak from their experience about what it feels like to live with Gorlin syndrome. The people who live with the disease every day.
In a recent episode of Patients Rising’s State of the Patient, Julie Breneiser from the Gorlin Syndrome Alliance (GSA), sat down with CEO Terry Wilcox to share what it feels like to live with Gorlin syndrome as a patient, and as a parent.
Julie shares her personal experience living with Gorlin syndrome, a lifetime of approximately 1,000 basal cell carcinomas, her children’s diagnosis at an early age, as well as the need for continued research and new treatment options. Because our community knows the tremendous impact this disease has on people's lives, and the devastation of seeing promising drugs come and go, Julie believes that we cannot be passive about advocacy for better treatments. Her relentless efforts help bring new opportunities to the entire GSA community.
We are grateful to Patients Rising for providing a platform for Julie to share her story and bring greater awareness to the experiences of the Gorlin syndrome community.
Listen to the episode: