Beverley De-Gale OBE, Daniel De-Gale OBE and Orin Lewis

One of the most respected blood cancer charities in the UK is celebrating its 20^th anniversary today (2^ndJune).

ACLT (African Caribbean Leukaemia Trust), was formed 20 years in June 1996 with an aim to raise awareness of the lack of donors on the UK Stem (Bone Marrow) Register, with a particular focus on black and mixed race individuals.  Its founders, Beverley De-Gale OBE, and Orin Lewis OBE, started the charity after their son Daniel De-Gale was diagnosed with leukaemia in April 1993 – he was just six years old. 

Daniel went onto receive two years of highly intensive chemotherapy treatment.  In March 1995 Daniel went into remission; he was cancer free. However, nine months later Daniel relapsed (the leukaemia returned).  His parents were informed he would need a stem cell transplant to save his life. However, he had a 1 in 250,000 chance of finding a matched donor as there were only 550 black and mixed race people on the register. Beverley and Orin decided very quickly to take matters into their hands and began an international media campaign to raise awareness of the lack of black and mixed race donors on the UK Stem Cell Register through Daniel’s story. 

Daniel captured the hearts of the nation when he appeared on the national news in 1996.  Six years later after his initial diagnosis (June 1999), Daniel went on to become the first black individual in the UK to receive a life-saving stem cell transplant from an unrelated donor.  Although he beat his fight against leukaemia, Daniel died in October 2008 from multiple organ failure. 

It is the belief of Daniel’s parents he waited far too long for a matched stem cell donor to be found.  In the six years before his transplant and two years’ post-transplant, he had received far too much chemotherapy, radiotherapy and other toxic treatments to combat the leukaemia, which later resulted in drastic complications with his health.  It is for this reason; the ultimate aim for ACLT is to ensure there is a matched donor waiting for anyone in need. And that no-one should die due to a potential donor not being found and readily available to save the life of someone in desperate need.

Daniel’s legacy lives on through the work of the ACLT.  Despite his parent’s sad loss, Beverley and Orin continue with their efforts to increase the number of ethnic minorities onto the UK stem cell (bone marrow), blood and organ donor registers.

 Today, ACLT have increased the numbers of individuals on the UK Stem Cell Register significantly, by registering over 70,000 individuals of all races.  The charity has also boosted the number of sign-ups to the Blood Donor Register by registering tens of thousands of donors in addition to over 4,000 onto the Organ Donor Register, since 2010.

Orin Lewis OBE, ACLT co-founder, and step-father to Daniel De-Gale says:

 “We are delighted to have achieved such a milestone for our small yet impactful charity.  We are committed to reaching the wider black and mixed race communities, to educate and inform them on the importance of becoming a potential lifesaver through joining the stem cell, blood & organ donor registers.

 We are grateful to our partners NHS Blood & Transplant, Anthony Nolan and Delete Blood Cancer UK/DKMS. Their support over the years has assisted us to deliver excellent results for us as a charity and them as long-term partners. The work achieved is something of which we can be very proud of.  Despite the loss of our son Daniel in 2008 who was the inspiration behind why ACLT started, we know he is with us, proud of all what we have achieved and continue to do – in his name.  We look forward to developing further relationships with additional charity partners, and we look forward to supporting them and extending our commitment to the local communities across the UK to ensure there are unrelated matches for them, should they ever be in need.”

There are a variety of events planned for the rest of the year to not only celebrate, but engage patients past and present, volunteers, supporters as well as celebrity supporters, friends and ambassadors.

This Sunday (June 5),  ACLT will hold a large-scale donor registration drive at the annual basketball ‘Hoopsfix All-Star Classic event. The one-day basketball showcase, which is run by British basketball website Hoopsfix.com will host the ACLT donor registration drive in the main sports hall – the same hall where the basketball showcase will be held at, Better’s Brixton Recreation Centre, Brixton.  ACLT will be registering anyone in good health aged 16-55. Registrants will be asked to complete a short application form and provide a cheek swab.

For information on how to make a financial donation to sustain and support the work of ACLT, please visit: www.aclt.org

To join the UK registers for stem cell, blood and organ please visit www.aclt.org and select, ‘join the registers.’

Rest In Peace Daniel De-Gale.

#ACLTTurns20