About Sickle Cell Prodigy
Our Founder's Story
Sickle cell disease (SCD) is the rock on which I’ve built my perfectly imperfect life. But as I got older, my symptoms got worse and my quality of life was on a gradual decline. Desperate times call for desperate measures, so in 2017, I started researching curative therapies for sickle cell disease—because I needed to take control of my health.
After receiving my stem cell transplant in 2019, I looked in the mirror and felt like a stranger in my own body. For years, my identity was tied to being a “sickle cell warrior” — the pain, the hospital stays, the strength it took to survive each pain crisis. But when the vaso-occlusive episodes stopped, I was left asking one simple but profound question: “Who am I?”
While I had a new lease on life, I was faced with new challenges — side effects, unfamiliar emotions, neuropathic pain, and the quiet weight of being “cured” yet still feeling misunderstood.
As my network in sickle cell advocacy grew, I met others who shared this experience:
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Survivors, grateful to be alive yet unsure how to adjust to their new normal
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Warriors, eager for access to transformative therapies but unsure where to begin
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Care Partners, like my mother, wanting to support their loved ones but unsure how to in this next phase
That realization sparked Sickle Cell Prodigy — a patient-driven organization dedicated to bridging the gap between transformative therapies and what comes after. Mama always said "When a community stands together, healing becomes possible, hope becomes visible, and the impossible becomes within reach."
We hope you join us in redefining life beyond the cure.
- Wunmi and Tina Bakare
Co-Founders, Sickle Cell Prodigy
Who We Are
Sickle Cell Prodigy stands at the intersection of medicine, community, and identity. We are a collective of survivors, advocates, caregivers, and health partners committed to transforming what survivorship looks like for people living with sickle cell disease.
Who We Serve
Pre-Therapy Warriors
(patients interested in transplant or gene therapy)
Post-Therapy Survivors
(transplant and gene therapy recipients)
Families & Care Partners
(transplant donors, parents, siblings, spouses, and loved ones )
We offer accessible, evidence-based education to help sickle cell patients make informed decisions about cell and gene-based therapies.
We provide ongoing guidance, trusted health + wellness resources, and leverage community connections that nurture long-term healing and an improved quality of life.
We equip families and care partners with coping tools and communication strategies, so they can better understand the treatment process and its emotional impact on the patient.
Our Approach to Survivorship
1.
Patient Storytelling + Representation
Amplify the lived experiences of patients and their care partners in ways that inspire, inform, and humanize the transformative therapy journey
3.
Post-Therapy Empowerment + Support
Offer comprehensive survivorship programs that address the physical, emotional, and psychosocial dimensions of life after treatment through holistic care models.
2.
Pre-Therapy Education + Awareness
Create accessible, accurate, and culturally grounded educational resources to empower patients, families, and care partners to make informed decisions.
4.
Advocacy + Research Collaboration
Partner with clinicians, researchers, and pharma/biotech industry leaders to deliver clear, relevant, and culturally-sensitive educational materials that support unmet patient needs.
Executive Leadership
Behind Sickle Cell Prodigy is a passionate team of survivors, advocates, clinicians, parents, donors, research scientists, and healthcare professionals united by a single purpose — to help patients not only survive sickle cell disease, but thrive after it.
Our team brings together expertise in advocacy, health communication, research, clinical trial design, patient engagement, digital marketing, and wellness programming. Many of us are lived-experience experts — individuals who have walked the path of transformative therapy and now dedicate our work to guiding others through it.
Sickle Cell Community-Based Partners
Advocacy Organizations
Industry Collaborators
