Why we do what we do
ACLT was founded in 1996 when Daniel De-Gale was told there would be a 1 in 250,000 chance of finding a donor because of his ethnicity. Diagnosed with acute lymphoblastic leukaemia (ALL) in 1993, he passed away in 2008 due to multiple organ failure. Beverley De-Gale, OBE and Orin Lewis, OBE, Daniel’s parents feel it took too long to find a matched donor.
In 1999 Daniel, became the first black individual in the UK to receive a stem cell transplant from an unrelated donor. As a direct result of the transplant and the regular blood transfusions he received, Daniel lived a happy life, finally free from blood cancer for several years.
We believe that no one should die waiting to find their donor match.
Although a match was found, the search went on too long. Why does it take it so long to find a match for someone of Black heritage?
Just take a look at the numbers...
The NHS Blood and Transplant need 12,000 new blood donors of Black heritage to meet the growing demand for ethnically matched blood for sickle cell warriors, who need regular blood transfusions to stay alive.
Black heritage blood donors are ten times more likely to have a RO blood subtype which is urgently needed to treat the 15,000 people in the UK with sickle cell disorder – which is prevalent within the Black African, Caribbean, or mixed backgrounds.
As a charity we aim to…
Improve the odds of finding matches by registering potential donors from all ethnicities, with a focus on donors from the African and Caribbean communities – due to a shortage of donors from these backgrounds. Partnering with organisations such as NHS Blood and Transplant, Anthony Nolan and DKMS we raise awareness and direct potential donors to sign up to their registers to donate blood, stem cells (bone marrow) and organs.
Policy influence
As we look towards the next 30 years, our ambition extends beyond the work we do today. We are committed to influencing the systems, policies and partnerships that will shape the future of organ, blood and stem cell donation and transplantation for generations to come. As part of this longer-term strategic vision, we are is directly involved in national policy and advocacy work through our co-founder Orin Lewis and his role as Co-Chair of the National Black, Asian, Mixed Race and Minority Ethnic Transplant Alliance (NBTA).
The NBTA is a coalition of secular, community and faith-based organisations working collectively to promote greater awareness and understanding of organ, blood and stem cell donation and transplantation among people from ethnically diverse communities. Its purpose is clear: to help increase the number of donors from these communities and, ultimately, improve the chances of patients finding the lifesaving matches they need. The Alliance brings organisations together to encourage effective and influential partnership working, sharing knowledge, experience, skills and existing infrastructure to create greater impact than any organisation could achieve alone.
Through the NBTA, Orin also serves as Secretariat to the All-Party Parliamentary Group (APPG) for Ethnicity, Transplantation and Transfusion, helping to ensure that the experiences and needs of mixed-heritage and ethnic minority patients remain part of the national conversation around transplantation and transfusion. This policy work is an important part of ACLT’s legacy and its future.
For 30 years, ACLT has worked to save and improve lives by tackling inequalities in access to life-saving donors. Looking ahead, we know that lasting change requires more than encouraging individuals to donate, it requires influencing policy, strengthening partnerships and ensuring that equity is embedded within the systems that determine who has access to life-saving treatment.
