The Sickle Cell Disease Association of America, Inc. (SCDAA) was deeply saddened to hear of the recent loss of Genesis Jones, a dedicated warrior and sickle cell advocate. An active and influential member of our community, we were honored to have her join us in June as a panelist during the joint SCDAA/NHLBI community forum “Research that Heals: Partnering with Patients to Transform SCD Care.” Her powerful testimony served as a tribute to her resilience, dedication and strength, and her memory will live on in our hearts.

Genesis was a dynamic advocate and speaker who was passionate about supporting individuals with rare conditions. She was a bone marrow transplant survivor and had recently earned a Master of Education in clinical mental health counseling. As a published author and public speaker, Genesis shared her story across national stages. She collaborated with many leading organizations including SCDAA, NMDP, National Institutes of Health, Foundation for Sickle Cell Disease Research and the Rare Disease Diversity Coalition to raise awareness, influence policy and develop resources that center the voices of survivors. In addition, she founded the nonprofit Rare Resilience Alliance dedicated to empowering individuals living with rare diseases — especially those navigating sickle cell and transplant journeys. Her work made a lasting impact on the sickle cell disease space and helped pave the way for progress.

SCDAA extends our heartfelt condolences to Genesis’s family and friends on their untimely loss. A memorial service will be held on August 22 in Arlington, Texas. To learn more about Genesis’s outstanding life, view details about services and/or give in her memory, visit: https://www.wadefamilyfuneralhome.com/obituaries/genesis-jones