Cayenne Wellness Center is set to celebrate a significant milestone this September as it hosts the 20th Annual Sickle Cell Disease Educational Summit, a five-day event dedicated to advancing education, advocacy, and support for those affected by sickle cell disease. The summit, scheduled for September 16–20, 2026, at the Marriott Long Beach Downtown in Long Beach, California, and online, will bring together patients, caregivers, healthcare professionals, researchers, and community leaders under the theme “20/20 Vision: Our Legacy Continues.”
Founded in 2000, Cayenne Wellness Center has been a steadfast advocate for individuals living with sickle cell disease in California. This year’s summit marks two decades of progress, highlighted by the evolution of treatment options. As Dr. Carolyn Rowley, Executive Director and Founder of Cayenne Wellness Center, noted, “In 1910, Dr. James B. Herrick published his observations of the unusual, elongated sickle-shaped cells found in an intelligent Negro named Walter Clement Noel. One hundred and sixteen years later, we enter our 20th Annual SCD Educational Summit with two FDA-approved gene therapies and three FDA-approved disease-modifying treatments, an extraordinary pipeline of new therapies, Warriors living fuller lives, and caregivers insisting that their voices be seen and heard.”
The summit’s genesis is rooted in a personal story of advocacy. Dr. Rowley explained, “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. Stephanie Mulkey, a Warrior, and Pat Corley, RN, listened and responded. Although Stephanie passed away before she could see the first seminar she helped plan, her vision lives on.” What started as a half-day gathering has grown into a comprehensive multi-day event, reflecting the community’s growing needs and the expanding landscape of sickle cell care.
The event will feature a diverse array of sessions designed to address both clinical advances and the everyday experiences of those living with the disease. On Wednesday, September 16, attendees will explore FDA-approved and emerging therapies, red blood cell exchange, gene therapy, and community-engaged research. The evening Physician Track will include a panel on pain management and a session titled “Real Talk, Real Pain: Perspectives from Physicians Living with Sickle Cell Disease.”
Thursday, September 17, will focus on wellness and reproductive health, offering sessions on acupuncture, acupressure, sound healing, reflexology, nutrition, and sickle cell trait awareness. Friday’s programming will cover life transitions, dating, marriage, careers, aging, caregiving, financial planning, and women’s and men’s health, culminating in an award ceremony, dinner, and benefit concert. Saturday will delve into mental health, trauma, and the role of artificial intelligence in medicine and sickle cell care, while Sunday will feature the Scar Stories Exhibit, an artistic and personal exploration of the disease’s impact.
The summit is particularly timely given the recent advancements in treatment. With two FDA-approved gene therapies and three disease-modifying treatments now available, the landscape for sickle cell disease has transformed significantly. However, as Dr. Rowley emphasized, “We honor how far we have come, but we also recognize how far we still have to go.” The event aims to bridge gaps in care, increase awareness among healthcare providers, and empower patients and families with knowledge and resources.
Registration is now open for those wishing to attend in person or virtually. Interested participants can register at https://cayennewellness.org/scd-educational-summit-2026/. Organizations and businesses can also reserve vendor or exhibitor tables to connect with attendees; more information is available at https://tinyurl.com/SVENDOR2026.
The summit underscores a broader movement toward equity in healthcare. As sickle cell disease disproportionately affects people of African descent, the event serves as a platform to address disparities in treatment access and research funding. By bringing together a diverse coalition of stakeholders, Cayenne Wellness Center continues to champion the needs of the sickle cell community, ensuring that the legacy of advocacy sparked by Stephanie Mulkey endures.
