Baba-Jallah Epega: Sickle Cell Resilience Through Patient Voices and Clinical Insight
Baba – Jallah Epega, Founder at The Richard Coker Foundation ( U.K. Registered Sickle Cell Charity), Director at Akoje Gallery, shared a post on LinkedIn:
“On Saturday, 18 April, I had the distinct pleasure and honour, as Founder of The Richard Coker Foundation and member of the Sickle Cell Alliance to host and moderate the ‘Sickle Cell’: Resilience Through the Years’ event at St Annes Church, in Soho, London before proudly handing the baton to Feyona Daley of Imperial Sickle Cell Group mid afternoon.
We started with a Yoga session from guru Shirey and Spoken Word from T the Poet ( Balogun).
Kindly sponsored by NIHR (National Institute for Health and Care Research) and convened by the Non – Malignan Haematology Clinical Trials Unit , this event delivered in partnership with us all along with a host of committed organisations brought together patients, clinicians, researchers, and community voices in one unified purpose: to demystify clinical trials and inspire participation through lived experience and expert insight.
At its heart, this was a patient-led narrative. We heard deeply moving testimonies from individuals who have experienced clinical trials before and after sharing candid reflections on their journeys, challenges, and life-changing outcomes.
These voices were complemented by leading haematologists like Steven Okoli and healthcare professionals like Tung Le Camelia Vladescu and in events Olivia Walker who clearly outlined available clinical trials, expectations, treatment pathways, and the critical importance of thorough pre – trial assessments across organs and systems.
Beyond clinical science, the programme delivered a truly holistic lens on living with sickle cell from Rudi Page amongst others.
From Jael Israel enlightening session on nutrition focusing on healing, repair, and slowing cellular damage to expert insights on endocrine health and the prevention of sickle cell retinopathy, the depth of knowledge shared was exceptional.
Equally impactful were contributions from Christiana Dinah , Patrick Ojeer and Laurel Brumant – Palmer emphasising the ongoing need for communication, education, and culturally relevant support systems to ensure patients feel informed, empowered, and supported throughout their care journeys.
This was more than an event it was a meeting of minds, hearts, and lived realities.
A space where science met storytelling, and where resilience was not only discussed, but deeply felt.
My sincere thanks to all our speakers, partners, and attendees who made this such a meaningful and memorable occasion.
See attached images and our Agenda.
Please register for our next event on May 15th.
Here quoting The Richard Coker Foundation as your introducer.”
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