The Sickle Cell Community Consortium (SC3) celebrated its 9th Annual Leadership Summit and General Assembly on Saturday, April 26, at the Atlanta Airport Marriott, marking a decade of resilience and collective action for the sickle cell community.
With the theme “Legacy of Leadership: Advancing Leadership for Impactful Change,” the event brought together leaders, patients, caregivers, and advocates committed to empowering individuals living with sickle cell disease.
Dr. Lakiea Bailey, founder of SC3 and a lifelong sickle cell disease patient, emphasized the organization’s guiding principle: “Nothing for us, without us.” Speaking on the societal impacts of the illness, she stated, “When you are growing up with an illness like this, those indirectly around you teach you helplessness. Our goal here is to un-teach helplessness.”
Sharonda Sikes, SC3’s director of operations, highlighted the Consortium’s proactive stance on advocacy. She asserted, “If we do not have a seat at the table, we build it, create it, and make it for ourselves—and then we invite them into our space.” Sikes underscored the growth of SC3, which now includes over 90 domestic partner organizations and 25 international partners, as a demonstration of unity.
The sense of community is palpable at SC3’s events, described by Sikes as a family reunion. “Every time we have a convention, it is a family reunion,” she shared, indicating that SC3’s Warrior Con welcomes everyone, from patients and caregivers to trait carriers and allies. She raised an important point: “When somebody in your family has sickle cell, your entire family does. Why not educate each and every person there?”
This year’s Warrior Con, taking place in Orlando, Florida, will offer educational tracks tailored for men, caregivers, children, trait carriers, and emerging advocates. Last year’s convention featured a “Warrior University” and a celebratory “Homecoming,” aimed at creating a supportive environment for attendees of all ages.
In addition to the annual convention, SC3 hosts a virtual Caregiver Summit in November and an end-of-year Sickle Cell Expo that showcases the talent and contributions of the community.
Among SC3’s notable achievements are the establishment of the children’s advocacy track, enhancement of international partnerships, and the launch of the #WeAreTheCure project. This initiative raises awareness for marrow and organ donation while the organization collectively produces a range of positive outcomes in education policy, mental health, and curative therapies.
Despite affecting a larger population, sickle cell disease (SCD) has faced significant disparities in research funding compared to other diseases. A 2020 study in JAMA Open showed stark contrasts in federal funding between cystic fibrosis (CF) and SCD. Between 2008 and 2018, federal funding per person was approximately $2,807 for CF, while SCD received a mere $812. This funding imbalance is mirrored in foundation support, with CF receiving around $7,690 per person compared to only $102 for SCD, creating significant barriers in research output and drug development.
Dr. Bailey attributed SC3’s progress to the strength of the support network surrounding it. “This organization couldn’t run without an amazing, amazing team,” she said. “Take the cape off—you cannot do it all. But with support and faith, we push forward.”
For those interested in learning more about SC3, they can text “SC3” to 61474.
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