National Lottery Grants for Heritage – £10,000 to £250,000
The west midlands-based charity Plasma of Hope supports and advocates for people living with sickle cell disease. The most common inherited genetic disorder in the UK, it is particularly common in people with an African or Caribbean family background.
The project is recording patients’ personal experiences of how managing and treating sickle cell disease has evolved. The team are interviewing 20 individuals living with the disorder, comparing past and present treatment and delving deep into how it has impacted their wellbeing and lifestyles.
By sharing their stories through workshops and seminars in schools and healthcare institutions, the project is demonstrating how treatment has transformed over time and drawing valuable lessons from the past.
The charity’s founder and CEO Marie-Claire Kofi was herself born with sickle cell disease. She said: “We want everyone living with this disease to make the most of their lives. We are so grateful to The National Lottery Heritage Fund for helping us turn our vision into a reality through this important two-year project.
By sharing people’s experiences, we can educate the wider community about the challenges, stigma and misconceptions associated with the condition, fostering greater understanding and empathy.
We believe this project will empower people with sickle cell disease by giving them a platform to be heard. It will also help them reclaim their narratives and inspire others facing similar challenges to persevere and take control of their health and wellbeing.”
