In a milestone year for sickle cell disease advocacy, Cayenne Wellness Center will host its 20th Annual Sickle Cell Disease Educational Summit from September 16 to 20, 2026, at the Marriott Long Beach Downtown in Long Beach, California. The event, themed "20/20 Vision: Our Legacy Continues," brings together patients, caregivers, healthcare professionals, researchers, and advocates for five days of education, connection, and celebration. Agios serves as the Ruby Level title sponsor.
The summit's origins trace back to a patient's demand for better care. As Dr. Carolyn Rowley, Executive Director and Founder of Cayenne Wellness Center, explains, "Twenty years ago, this Summit began because one Warrior demanded more—more awareness, more education, and more understanding from the healthcare professionals caring for them." That warrior, Stephanie Mulkey, and nurse Pat Corley, RN, envisioned a gathering that would address the gaps in sickle cell knowledge. Although Mulkey passed away before the first seminar, her vision persisted, evolving from a half-day event to the comprehensive five-day program offered today.
This year's summit arrives at a pivotal moment in sickle cell treatment. In 1910, Dr. James B. Herrick first described the sickle-shaped cells that characterize the disease. Now, 116 years later, the medical landscape includes two FDA-approved gene therapies and three disease-modifying treatments, along with a robust pipeline of new therapies. The summit will explore these advances while acknowledging the ongoing challenges faced by the sickle cell community.
The program spans four days of intensive sessions. On Wednesday, September 16, topics include FDA-approved and emerging therapies, red blood cell exchange, gene therapy, and community-engaged research. An evening physician track will address pain management and feature "Real Talk, Real Pain: Perspectives from Physicians Living with Sickle Cell Disease." Thursday focuses on wellness modalities like acupuncture, sound healing, and nutrition, as well as sickle cell trait awareness and reproductive health. Friday's sessions cover life transitions, dating, careers, aging, and financial planning, culminating in an awards ceremony and benefit concert. Saturday emphasizes mental health, trauma, and the role of artificial intelligence in sickle cell care, alongside storytelling sessions. The summit concludes Sunday with a visit to the Scar Stories Exhibit, an artistic reflection on living with the disease.
Registration is now open for all interested participants. Sickle cell warriors, families, caregivers, and healthcare professionals can register at https://cayennewellness.org/scd-educational-summit-2026/. Vendor and exhibitor opportunities are also available; organizations can reserve a table at https://tinyurl.com/SVENDOR2026.
Cayenne Wellness Center and Children's Foundation, established in 2000, is a nonprofit dedicated to improving the quality of life for individuals with sickle cell disease in California. Through education, advocacy, and comprehensive support, the organization continues to lead efforts in advancing sickle cell resources. For more information, visit CayenneWellness.org.
