For Dr. Lakeia Bailey, living with sickle cell disease isn’t just personal—it’s her life’s purpose. Diagnosed at age three, she has transformed her journey from patient to powerhouse, becoming the executive director of the Sickle Cell Consortium. As the organization celebrates its 10th anniversary, Dr. Bailey reflects on a decade of transformative impact driven by the strength of community partnerships.
“The Consortium was never built to operate alone,” Bailey says. “We’re a collective—a general assembly of patients, caregivers, and grassroots organizations coming together to move the needle forward.”
Founded with a unique structure that mirrors the United Nations, the Sickle Cell Consortium is made up of over 80 domestic and international partners. Together, they identify the most pressing gaps in sickle cell advocacy and create programs to address them—like the Men’s Wellness Track, the Caregiver Summit, and the Warrior’s Convention, which brings together hundreds of patients and families annually.
But their work extends far beyond events. With more than $30,000 in direct emergency aid distributed, the Consortium has become a safety net for warriors facing medical and financial crises—covering everything from utility bills to urgent housing needs.
A Call to Action: We Are The Cure
One of the Consortium’s most impactful initiatives is We Are The Cure, a campaign designed to increase Black participation in bone marrow and organ donation registries.
“Black people are significantly underrepresented in the national marrow registry,” Bailey explains. “But we make up a large portion of those in need.”
By texting SC3 to 61474, individuals can begin the simple cheek swab process to determine if they’re a match for someone in need. The Consortium also supports individuals like Tahirah, a sickle cell warrior currently seeking a kidney donor. Her story, Bailey says, is a powerful reminder of what’s at stake—and the potential each of us has to save a life.
Bridging the Healthcare Gap
Despite advancements in treatment, access to quality care remains a major barrier.
“Too many people still think sickle cell has been cured or isn’t a big issue anymore,” Bailey says. “But the reality is, lifesaving treatments remain out of reach for most patients.”
She speaks from experience. From being dismissed in emergency rooms to watching hematologist numbers dwindle nationwide, Bailey has lived the inequities many sickle cell warriors face.
The Consortium is tackling this head-on through legislative advocacy—most notably through its annual partnership with SiC Cells for the Sickle Cell Policy Forum, where patients speak directly with lawmakers about necessary reforms in Medicaid, treatment coverage, and medical education.
Leading the Next Generation
This April, the Consortium will host its ninth annual Leadership Summit in Atlanta. Designed for partner organizations, the Summit is a hub for training, collaboration, and strategic planning. Workshops will cover everything from AI-powered nonprofit tools to burnout prevention and grant writing.
“This isn’t just a meeting—it’s where the future of sickle cell advocacy is shaped,” Bailey says.
And this summer, the celebration continues in Orlando with the Warrior’s Convention—open to the public and packed with family-friendly fun, wellness events, a royal ball, and a special 10-year anniversary gala.
From Bench to Boardroom
Dr. Bailey’s path from biochemist to executive director was shaped by both passion and necessity. A former NIH-funded researcher, she left the lab when her health declined and shifted her focus to community advocacy. Today, she channels her expertise into systemic change—grounded in science, but powered by lived experience.
“I don’t know if I would’ve done any of this if I wasn’t also a patient,” she says. “But because I am, I understand what’s truly needed.”
How to Get Involved
Whether you’re a patient, a parent, or a supporter, there are many ways to connect:
