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 De-Gale, 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 part of the longer term strategy work of the ACLT, Orin Lewis OBE is directly involved in key top level policy change work via his role as the Co-Chair of the National Black, Asian, Mixed Race, and Minority Ethnic Transplant Alliance (NBTA) which is a coalition of organisations (secular/community/religious) which seeks to promote positive and influential awareness of organ, blood and stem cell donation/transplantation amongst ethnic and diverse background people in order to increase the number of donors from these communities.
The NBTA aims to promote influential, effective and efficient partnership working between members, encouraging a coordination of initiatives that make the most of skills, experience and infrastructure already available.
Also, via the NBTA, Orin is also the Secretariat of the APPG (All Party Parliamentary Group) for Ethnicity Transplantation and Transfusion, which advocates for equitable access to treatment for mixed heritage and ethnic minority patients.
