In a milestone anniversary, Cayenne Wellness Center will host the 20th Annual Sickle Cell Disease Educational Summit from September 16 to 20, 2026, at the Marriott Long Beach Downtown in Long Beach, California. Themed "20/20 Vision: Our Legacy Continues," the five-day event will convene patients, caregivers, healthcare professionals, researchers, and advocates to reflect on past achievements and address the future of sickle cell disease (SCD) care.
The summit traces its origins 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, initiated the first seminar, which has since expanded from a half-day gathering to a four-day comprehensive program. "Although Stephanie passed away before she could see the first seminar she helped plan, her vision lives on," Rowley added.
The summit comes at a pivotal time in SCD treatment. In 1910, Dr. James B. Herrick first described sickle-shaped cells, and now, 116 years later, the field has seen two FDA-approved gene therapies and three FDA-approved disease-modifying treatments. Rowley emphasized, "We honor how far we have come, but we also recognize how far we still have to go." The event will explore both clinical advances and the everyday realities of living with the disease.
Each day of the summit targets distinct themes. Wednesday, September 16, focuses on treatment and research, with sessions on FDA-approved therapies, red blood cell exchange, gene therapy, and community-engaged research. An evening Physician Track includes "Real Talk, Real Pain: Perspectives from Physicians Living with Sickle Cell Disease." Thursday, September 17, covers wellness, sickle cell trait, and reproductive health, offering acupuncture, sound healing, nutrition, and reproductive counseling. Friday, September 18, addresses living and thriving across the lifespan, including transition, careers, aging, and financial planning, followed by an award ceremony and benefit concert. Saturday, September 19, delves into mental health, technology, and storytelling, featuring discussions on trauma, anxiety, grief, and artificial intelligence in medicine. The summit concludes Sunday, September 20, with the Scar Stories Exhibit, an artistic portrayal of SCD experiences.
Registration is now open for warriors, families, caregivers, and professionals at https://cayennewellness.org/scd-educational-summit-2026/. Vendor and exhibitor opportunities are also available at https://tinyurl.com/SVENDOR2026.
Cayenne Wellness Center and Children's Foundation, a 501(c)(3) nonprofit established in 2000, has long been dedicated to improving quality of life for those with sickle cell disease in California. This summit represents not only a celebration of progress but also a continued commitment to advocacy and education, ensuring that the voices of patients and caregivers remain central to the fight against SCD.
