This September, Cayenne Wellness Center will host the 20th Annual Sickle Cell Disease Educational Summit, a milestone that underscores two decades of advocacy and progress in the fight against sickle cell disease. Scheduled from September 16 to 20, 2026, at the Marriott Long Beach Downtown in Long Beach, California, the summit will also offer virtual participation. The event, themed "20/20 Vision: Our Legacy Continues," is designed for healthcare professionals, educators, social workers, students, individuals and families affected by sickle cell disease, and the broader community.
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 her nurse, Pat Corley, RN, envisioned a gathering that would address the gaps in sickle cell education. Though Mulkey passed before the first seminar, her vision endured. What started as a half-day event has grown into a five-day conference.
The significance of this anniversary is profound. In 1910, Dr. James B. Herrick first described sickle-shaped cells in Walter Clement Noel. Over a century later, the landscape has transformed with 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 will explore both breakthroughs and the persistent challenges.
The program spans a range of topics. On Wednesday, September 16, sessions will cover FDA-approved and emerging therapies, red blood cell exchange, gene therapy, and community-engaged research. A physician track will feature "Real Talk, Real Pain: Perspectives from Physicians Living with Sickle Cell Disease." Thursday focuses on wellness, including acupuncture, nutrition, and sickle cell trait awareness, alongside reproductive health and insurance discussions. Friday addresses living and thriving across the lifespan, with topics like transition, dating, marriage, careers, and caregiving, followed by an awards ceremony and benefit concert. Saturday delves into mental health, trauma, and the role of artificial intelligence in medicine, while Sunday concludes with the Scar Stories Exhibit, an artistic reflection on sickle cell experiences.
Registration is now open for warriors, families, caregivers, and professionals. Interested participants can sign up at Cayenne Wellness Center's summit page. Vendor and exhibitor opportunities are also available, with details at this link.
Cayenne Wellness Center and Children's Foundation, a 501(c)(3) nonprofit established in 2000, continues to lead in sickle cell support, education, and advocacy. As the summit celebrates its 20th year, it stands as a testament to the enduring demand for better care and the relentless spirit of the sickle cell community.
