This September, the Cayenne Wellness Center will host its 20th Annual Sickle Cell Disease Educational Summit, a milestone that reflects two decades of progress in sickle cell care and advocacy. Scheduled from September 16 to 20, 2026, at the Marriott Long Beach Downtown in Long Beach, California, the summit will also be accessible online, with Agios serving as the Ruby Level title sponsor. The theme, '20/20 Vision: Our Legacy Continues,' encapsulates both the journey traveled and the work still ahead.
The summit originated from a patient's plea for better care. As Dr. Carolyn Rowley, Executive Director and Founder of Cayenne Wellness Center, recalls, '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, set in motion a movement that has grown from a half-day gathering to a five-day event. Although Stephanie passed before the first seminar, her vision endures. The summit now attracts healthcare professionals, researchers, advocates, individuals affected by sickle cell disease, and community members for education, connection, and celebration.
The significance of this anniversary is profound. In 1910, Dr. James B. Herrick first described sickle-shaped cells in a patient named Walter Clement Noel. Over a century later, the field has witnessed transformative advances, including two FDA-approved gene therapies and three disease-modifying treatments. Yet, as Dr. Rowley notes, 'We honor how far we have come, but we also recognize how far we still have to go.' The summit serves as a testament to the resilience of warriors and caregivers, and to the ongoing demand for better care and support.
The five-day program is designed to cover the spectrum of sickle cell disease experiences. Wednesday, September 16, will focus on treatment and research, featuring sessions on FDA-approved and emerging therapies, red blood cell exchange, gene therapy, and community-engaged research. An evening physician track will address pain management and include 'Real Talk, Real Pain: Perspectives from Physicians Living with Sickle Cell Disease.' Thursday, September 17, shifts to wellness and reproductive health, offering workshops on acupuncture, acupressure, sound healing, nutrition, sickle cell trait awareness, and reproductive counseling. Friday, September 18, will address living and thriving across the lifespan, with topics like transition, dating, marriage, careers, aging, caregiving, and financial planning, followed by an award ceremony, dinner, and benefit concert. Saturday, September 19, will explore mental health, technology, and storytelling, including sessions on trauma, depression, anxiety, artificial intelligence in medicine, and personal narratives. The summit concludes Sunday, September 20, with a visit to the Scar Stories Exhibit, an artistic representation of sickle cell experiences.
The event also provides opportunities for networking, vendor exhibits, and community resource access. Registration is now open at https://cayennewellness.org/scd-educational-summit-2026/. Vendor and exhibitor tables are available for organizations and businesses; interested parties can reserve a table at https://tinyurl.com/SVENDOR2026.
Cayenne Wellness Center and Children's Foundation, a 501(c)(3) nonprofit established in 2000, has been instrumental in advancing sickle cell support in California. The organization provides comprehensive care, education, and advocacy, and this summit underscores its ongoing commitment to improving quality of life for those affected by sickle cell disease. As the summit celebrates its 20th year, it stands as a beacon of progress and a reminder of the collective effort required to meet the challenges that remain.
