Our Approach

SickleWell is building a coordinated ecosystem of support designed to meet the real, lived complexity of sickle cell across the lifespan.

For too long, support for people living with sickle cell has been fragmented across disconnected systems. Medical care, education, employment, financial stability, and wellness supports are often addressed in isolation, leaving individuals and families to shoulder the work of coordination themselves. The result is a lack of continuity, alignment, and structure across daily life.

SickleWell exists to address this gap by designing care differently.

Our approach is grounded in the lived reality of navigating these systems over time and recognizing how deeply interconnected they are in practice, even when they are separated in policy and service delivery. We are building an integrated, wraparound model that reflects how people actually live, not how services are traditionally organized.

SickleWell centers sustained support over time, not one-time interventions or crisis-only responses. From the earliest stages of life through adulthood, we work alongside families to reduce disruption, strengthen stability, and expand access to opportunity and joy.

At the core of our model is relational coordination. Each family is supported by an Integrated Support Partner who serves as a consistent point of connection across systems. This role supports navigation across medical care, educational needs, social services, and life transitions with continuity and trust. It is not about managing families, but about holding systems together so families are not left to do that work alone.

SickleWell also provides direct, flexible supports that respond to the realities of living with a chronic, episodic condition. These include transportation to medical appointments, support during hospitalizations, academic and technology resources, wellness and respite supports, and financial stabilization during periods of disruption. Our goal is not to replace existing systems, but to bridge gaps between them and absorb impact when those systems fall short.

In parallel, we invest in community-based experiences that support whole-person wellness. Through monthly engagement opportunities, creative and movement-based activities, caregiver supports, and collective gatherings, SickleWell creates space for connection, rest, and belonging. Wellness is not treated as an afterthought, but as an essential condition for sustaining life with dignity and meaning.

Over time, SickleWell will also build shared infrastructure, including training, technology, and data systems, to strengthen coordination across providers and partners. This infrastructure supports learning, accountability, and long-term impact, ensuring that care is not only compassionate, but effective and scalable.

What we are building is more than a program. It is a different way of organizing care.

SickleWell exists to make it possible for people living with sickle cell and their families to experience stability alongside uncertainty, continuity alongside change, and joy alongside challenge. By designing systems that work together, we are creating the conditions not just to survive, but to live well.