Twenty years after a patient’s plea sparked a movement, the Cayenne Wellness Center is set to 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,” will bring together patients, caregivers, healthcare professionals, researchers, and advocates for five days of education, networking, and celebration.
The summit’s origins trace back to a demand for better care. According to Dr. Carolyn Rowley, Executive Director and Founder of Cayenne Wellness Center, the event began because Stephanie Mulkey, a sickle cell warrior, and nurse Pat Corley, RN, insisted on greater awareness and understanding from healthcare providers. Although Mulkey passed away before the first seminar, her vision endured, growing from a half-day gathering to a multi-day conference that now features four days of programming.
This year’s summit arrives at a pivotal moment in sickle cell disease treatment. In 1910, Dr. James B. Herrick first described the sickle-shaped cells, and 116 years later, the field has seen significant advancements, including two FDA-approved gene therapies and three disease-modifying treatments. The summit will explore these breakthroughs while addressing the everyday realities of living with the disease.
The agenda spans a range of topics. Wednesday’s sessions focus on treatment and research, including FDA-approved therapies, gene therapy, and a physician track on pain management. Thursday highlights wellness and reproductive health, with sessions on acupuncture, nutrition, and sickle cell trait awareness. Friday addresses living and thriving across the lifespan, covering transition, careers, and caregiving, followed by an awards ceremony and benefit concert. Saturday delves into mental health and technology, including the role of artificial intelligence in sickle cell care. The summit concludes Sunday with a visit to the Scar Stories Exhibit, an artistic showcase of patient experiences.
The event is designed for a broad audience, including healthcare professionals, educators, social workers, students, and families affected by sickle cell disease. Registration is now open at Cayenne Wellness Center’s summit page. Vendor and exhibitor opportunities are also available for organizations interested in connecting with attendees, with reservations made through this link.
Agios serves as the Ruby Level title sponsor for the event. Cayenne Wellness Center and Children’s Foundation, a 501(c)(3) nonprofit established in 2000, has been a trusted leader in advancing sickle cell support and resources in California, promoting education, advocacy, and comprehensive care.
As the summit marks its 20th anniversary, organizers emphasize both progress and remaining challenges. “We honor how far we have come, but we also recognize how far we still have to go,” Dr. Rowley said. The event stands as a testament to the belief that people living with sickle cell disease deserve more—and the commitment to keep demanding it.
