On Saturday 25th October we had the pleasure & honour of moderating the LivingWellwithSickleCell event on behalf of TheRichardCokerFoundation Non-Malignant Haematology Clinical Trials Unit SickleCellAlliance & Imperial Sickle Cell Group kindly sponsored by NIHR Research Delivery Network & ArcGroupWestLondon. What an inspiring day it was!
Over 60 Sickle Cell Victors gathered with clinicians, researchers, advocates, carers, and families for a powerful day of knowledge-sharing, connection and healing. The atmosphere was vibrant, courageous, and full of hope.
From the opening remarks by Dr Steven Okoli, to the deeply honest patient journeys, to the rich discussions on SickleCell by AriyikeSodeinde Nutrition BY Jael Israel, Physiotherapy by NatalieSmith, NAPS 2 B Fit, MentalHealth by DrJeremyyAnderson , Finance by SoniaMeikle and clinicalresearch by CharlotteLyon — every speaker brought wisdom, compassion and pure heart. Our panels were electric, our conversations authentic, and the sense of community was simply unforgettable.
A special thank you to all our contributors from Imperial College Healthcare NHS Trust, Non-Malignant Haematology Clinical Trials Unit , the NIHRWestLondonHaemoglobinopathyCoordinatingCentre, SickleCellSociety as well as our extraordinary patient advocates Laurel Brumant-Palmer Chanel Taylor Patrick Ojeer Feyona Daley Helen Epega Jabez Smith Dr. Rossby Awadzi Christiana Dinah
who lit up the room with lived experience, their personal stories, support , reasearch , work, family members courage and wisdom. Great Photos by StephenBadmosBugi
To everyone who attended:thank you for your openness, your questions, your stories, and your light. Living well with sickle cell is not just a theme; it’s a movement, and you proved that on that special Saturday.
And to the lead organisers especially Camelia Vladescu Olivia Walker Samantha Frost , Leena Islam Julie Makani Alinta Sara Adrian Wright, MSc, PMP
and many others ; a BIG THANK YOU for helping create a space where knowledge meets empathy, and where community becomes strength. Our collaborative legacy continues to shine through all of us, and this event reaffirmed why we do what we do:
* to elevate voices
* to push for equitable care
* to support research
* and ultimately… to help pave the way to an affordable for all cure.
Here’s to progress. Here’s to partnership.
And here’s to every warrior living boldly and brilliantly with sicklecell.
Until next time, we rise again.