Study Launch Event
Panoramic views of the London’s skyline were on offer, as the much-anticipated launch of the REDRESS study took place on Saturday 20th May 2023. It was wonderful to see the coming together of the public, academics, clinicians, supporters, and sickle warriors alike – showcasing the appetite for research and new treatments for sickle!
A mere stone’s throw from London Bridge, the Robens Suite on the 29th floor of Guy’s Hospital was host to a fully subscribed event. The programme was packed with engaging, informative, and exciting content for all attendees, including young families.
The day kicked off with a passionate welcome address from the charismatic John James OBE, Chief Executive of the Sickle Cell Society and Advisor to the REDRESS study team. John reminded us of the importance of “redressing” the balance of healthcare for communities affected by sickle cell.
Attendees were then treated to a musical interlude from Mezzo & Liv with a medley of contemporary R&D and soul classics! Be sure to look them up on Instagram! @livaidam @mezzomusic_yk
Dr Rachel Kesse-Adu, Consultant Sickle Doctor at Guy’s Hospital, then gave us all a background to sickle cell. What causes sickle? Who does sickle affect? The health problems sickle causes, the current treatments (which are not enough!) and the need for a cure for sickle cell.
Afterwards, Dr Ben Carpenter, Consultant Transplant Doctor at University College Hospital, provided an enlightening presentation about bone marrow transplant. It’s all in your bones! We learnt about how stem cells from donor bone marrow can be ‘transplanted’ into patients with sickle cell and transform into healthy red blood cells. We also learnt what it means to be a half-matched or fully matched family bone marrow donor.
Our commander and Chief (Investigator), Dr Victoria Potter – Consultant Doctor and Transplant Director at King’s College Hospital, gave us an introduction to the REDRESS study and what it is all about. Dr Potter talked us through the design of the study, about how this research is to understand whether transplant is better than the current treatments. A lively discussion followed all our talks with some important questions asked!
After a short break, we resumed with a Q&A Panel discussion hosted by John James. A special thank you to our marvellous panel: Ronke, Toby and KC! This was as an insightful and intriguing discussion as our panel of warriors shared their health journeys and experience of going through transplant with a beautiful and refreshing honesty. It was inspiring to hear their stories and emphasised the importance of this trial, which has the potential to establish a cure for many sufferers of sickle cell.
Our final talk came from the magnetic Dr Steven Okoli, Consultant Sickle Doctor at Hammersmith hospital. The title of his talk “Sickle cell research needs you!” drove home the message that research involve us all! Dr Okoli explained what clinical trials are, the pros and cons of participating in one and the stark disparities between treatments available for genetic conditions that affect sickle cell communities compared to their counterparts. The talk ended with encouragement that, if we all pull together, new treatments can be achieved!
We closed the day with the announcement of the poetry competition winner who took home the prize of a £50 Amazon gift card. Special congratulations to Esi! You can read her beautiful poem below:
Avascular necrosis, I don’t know where the joke is,
Degenerative condition, came about voteless,
Forced to live a life that’s seemingly hopeless?
Sickle Cell complications are remoteless.
Inflicting unbearable pain, affecting the body, soul and mind.
Yet I continue to rise, refusing to be defined,
Hope, faith & determination combined.
Finally, all in attendance shared a delicious lunch with jollof rice, jerk chicken, West African spinach stew and a dessert of banana flavoured puff-puff all on the menu. Yum! All in all, a good day.
