This September, Cayenne Wellness Center will host its 20th Annual Sickle Cell Disease Educational Summit, a milestone that underscores two decades of progress and persistent challenges in the fight against sickle cell disease. Scheduled from September 16 to 20, 2026, at the Marriott Long Beach Downtown and online, the summit carries the theme "20/20 Vision: Our Legacy Continues," reflecting both a look back at achievements and a forward-looking commitment to advocacy.
The summit's origins trace to a patient's demand for better care. Dr. Carolyn Rowley, Executive Director and Founder of Cayenne Wellness Center, recounted how the event began because a "Warrior" named Stephanie Mulkey and her nurse, Pat Corley, RN, sought more awareness and education from healthcare providers. Though Mulkey passed before the first seminar, her vision endured. What started as a half-day gathering has expanded into a five-day program covering education, connection, science, advocacy, and hope.
The timing is significant. In 1910, Dr. James B. Herrick first described sickle-shaped cells. Today, the summit convenes as two FDA-approved gene therapies and three disease-modifying treatments are available, with a robust pipeline of new therapies. Rowley emphasized that the summit is "more than an anniversary—it is a testament to every Warrior, caregiver, healthcare professional, advocate, and visionary like Stephanie who believed that people living with sickle cell disease deserved more."
The summit's agenda reflects both medical advances and the lived experiences of those affected. Wednesday, September 16, will focus on treatment and research, including 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 feature "Real Talk, Real Pain: Perspectives from Physicians Living with Sickle Cell Disease."
Thursday, September 17, shifts to wellness and reproductive health, with topics such as acupuncture, sound healing, nutrition, sickle cell trait awareness, and reproductive counseling. Friday, September 18, covers living and thriving across the lifespan, including transition, dating, careers, and financial planning, followed by an award ceremony, dinner, and benefit concert. Saturday, September 19, explores mental health, technology, and storytelling, including sessions on trauma, depression, and artificial intelligence in sickle cell care. The summit concludes Sunday, September 20, with a visit to the Scar Stories Exhibit, an artistic portrayal of sickle cell experiences.
Registration is open for warriors, families, caregivers, healthcare professionals, and advocates. Vendors and exhibitors can also reserve tables to connect with attendees. The summit is sponsored by Agios as the Ruby Level title sponsor.
Cayenne Wellness Center and Children's Foundation, a 501(c)(3) nonprofit established in 2000, has been a trusted leader in sickle cell support, providing education, advocacy, and resources. As the summit marks two decades, it highlights how far the community has come—and the work that remains. For more information, visit the summit registration page or reserve a vendor table.
