Advancing Survivorship Research
Curative treatments—like bone marrow transplant (BMT) and gene therapy—are transforming the lives of people living with sickle cell disease (SCD) but for many survivors, the journey doesn’t end after treatment. Chronic pain, fatigue, iron overload, avascular necrosis, cognitive changes, fertility concerns, and other late effects continue to shape daily life in ways that are often overlooked or undocumented.
At Sickle Cell Prodigy, we believe survivorship deserves the same attention, innovation, and compassion as treatment. That’s why we are launching a new initiative in partnership with Folia Health to better understand the long-term experiences of individuals who have undergone transformative therapies for SCD.
Why This Initiative Matters
Although curative therapies can reduce vaso-occlusive pain and improve organ function, many patients still face a highly individualized and unpredictable recovery.
Today, there is no standardized or accessible way for survivors to track their symptoms or for clinicians and researchers to understand post-treatment life in real time. This gap limits clinical care, slows scientific progress, and leaves patients without tools to advocate for their health journey.
As a stem cell transplant recipient managing chronic pain, iron overload, and avascular necrosis, our founder, Wunmi Bakare, knows firsthand how complex survivorship can be. Her lived experience fuels this effort to make patient voices and daily realities central to research.
Our Partnership with Folia Health
Together with Folia Health, we aim to adapt their Home-Reported Outcomes (HRO) platform specifically for sickle cell survivorship. This digital tool will allow survivors to:
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Track day-to-day symptoms, wellness indicators, and quality-of-life changes
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Document pain patterns, fatigue, cognitive symptoms, late effects, and reproductive health concerns
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Monitor immune recovery, organ health, medication adherence, and psychosocial well-being
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Generate a clear picture of their recovery journey over time
Participants maintain full control of their data and choose what to share for research.