Our Why
SickleWell grew out of our family’s lived experience. Long hospital days. Interrupted school weeks. The quiet work of holding one another together. We learned early that sickle cell reaches far beyond health alone. It shows up in classrooms, at kitchen tables, in moments of uncertainty, and in moments of joy. As a family, we learned how to advocate, how to adapt, and how to keep choosing hope. This work grew from those moments. SickleWell exists because we believe children and families living with sickle cell deserve support that sees their whole lives and makes room for joy, even alongside hard things.
Our Mission
SickleWell supports people living with sickle cell disease and their families by providing coordinated, whole-life support.
Sickle cell affects far more than medical care. It shapes how children experience school, how adults work and earn a living, how families plan, and how stress and fatigue show up every day. Yet support is often fragmented. Healthcare, education, financial stability, and wellness are treated as separate issues, even though they are deeply connected.
As a result, families are left to navigate complex systems on their own, managing gaps that no one system is designed to close.
SickleWell exists to change that. We focus on coordination, continuity, and practical support across the lifespan. Our work connects health navigation, education advocacy, economic and career support, and holistic wellness so families are not constantly starting over when needs change.
We believe people living with sickle cell deserve systems that work together. By aligning support and reducing preventable disruption, SickleWell helps create more stability, opportunity, and room to live well.
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