Please click on the above clapperboard to view 1st video about Daniel and ACLT
14 Years of the ACLT
On 2 June 2010 the ACLT celebrated the 14th Anniversary since the charity started its intrepid journey to support those who face incredible odds in their worldwide search for a life saving donor. As we approached the anniversary, Orin, Beverley and the team took time out to reflect on the tremendous challenges and achievements we have faced over the 14 years.
‘It’s too shocking for words’
Receiving the shock diagnosis that your son has Leukaemia is one thing. Being told that a tiny number of Black people are registered as potential unrelated donors is devastatingly tortuous. But a glimmer of hope springs … there is a 1 in 250,000 chance of finding a match and about 70% of children can be completely cured after five years if they receive the right treatment.
The challenge is set, and the ACLT was born!
‘HEROES WANTED - We need fresh blood’
Picture it, its 1996, you’re queuing outside the Hackney Empire, it’s cold and dark. But it’s not any old queue, you’ve turned up to register and be a lifesaver. Maybe, just maybe you could ‘Be the One’ to match someone like Daniel De-Gale and give the ‘Gift of Life’. Just like Helen Robinson whose trip to an ACLT drive at Tesco in Brixton in 1998 led her to be the match for a US citizen in 2002.
‘It’s like getting blood out of a stone!’
The charity’s biggest ongoing challenge is overcoming the fears myths and taboos around donation that feed their reluctance to step forward. The poignant word of one of our inspirational figures - US President Barack Obama, captures our sentiment
‘We are not a nation that falls prey to doubt or mistrust’
Education and awareness is the key to changing minds and attitudes.
‘Good times’
On Wednesday 16th June 1999 after 6 years of suffering with Leukaemia, Daniel finally received his life-changing bone marrow transplant donated by Doreene Carney, a 44 year old African American from Michigan – proof that a matching donor can be found anywhere in the world.
‘Joy and Pain…is like Sunshine and Rain’
Over the years these emotions sum up how we have got to where we are now. In our work there are always light and dark moments. With every success there is growing sadness. The recent and untimely passing of 7 year old Imogin Appiah (Ghanian heritage) and Tracey Tanyanyiwa (22, Zimbabwean) since the beginning of 2010 - amongst others such as Jasmina Anema (6, African American) – continue to remind us of the tragic losses in our communities and the task at hand…Change a Life to Save a Life!
‘We celebrate Daniel’s legacy everyday’
‘Looking to the Future’
The ACLT will continue to put the ‘Unity’ back in the Community’ to shape the future of donation in the UK for better health; and empower communities to make a difference themselves.
As a spirited teenage, the ACLT has boundless energy and drive. The ACLT is determined to raise much needed funds to educate and promote donation through the press and broadcast media, to increase awareness about the need for more donors. We aim to enlighten people with the facts about the poor representation of Black, Asian and Mixed Race donors, encourage informed debate and decision making in our efforts to tackle one of the biggest health inequalities in these communities.
We hope to enjoy your company and support throughout the next phase in our journey.
We believe in miracles, don’t you!
ACLT Achievements over the years
1996
3 May – Beverley De-Gale’s TV & Radio Appeal @ Hackney Empire
2 June - African Caribbean Leukaemia Trust (ACLT) begins
Established by Beverley De-Gale and Orin Lewis to recruit as many bone marrow and blood donors from the Black & Mixed Race community (around 550) ‘by any means necessary’
1999
By March the number of bone marrow donors grew to approx. 12,000
2002-3
Our co-founders of the ACLT make a heart and mind decision to resign from the safety of their BBC (Account Management) and IT (Contracts Management) jobs to work full-time on building up the ACLT charity. They work from a spare room at their home until in 2008 when they moved into an office in Central Croydon
2006
Beverley De-Gale and Orin Lewis are awarded the Daily Mirror ‘Pride of Britain’ Special Recognition Award.
2007
Beverley De-Gale and Orin Lewis were invited as members of Judging Panel for the daily Mirror ‘Pride of Britain’ 2007
2008
The charity is rebranded as the ACLT (Promoting Bone Marrow & Blood Donation). Finally the ACLT is able to set up an office in Central Croydon
The ACLT have helped to register approx. 30,000 potential bone marrow stem cell donors from Black & Mixed Race communities
The charity begins to also focus on recruiting Ethnic Minorities from all backgrounds as potential donors. There is also a major shortfall in donors for these communities
2010
To date the ACLT have directly recruited 30 donors who have gone on to give stem cell transplants
The ACLT has helped to register approx. 32,000 potential bone marrow stem cell donors from Black & Mixed Race communities
Spring - Orin wins London Educational Mentor / Trainer role for ‘Register and Be A Lifesaver’
We are pleased to announce the ACLT will play a key role in this exciting Education programme for Sixth Form students. These powerful and inspiring presentations have a track record of inspiring the young minds of students and their schools about the value of becoming a donor. Orin Lewis heads up the prestigious London regional campaign and invites ACLT supporters to volunteer as a trained public speakers to give the talks across the UK in the Autumn/Winter Term 2010.
The campaign is jointly funded from the Anthony Nolan Trust & NHS Blood & Transplant.
The following words were originally written in April 2003
The African Caribbean Leukaemia Trust (ACLT) was established on June 2nd 1996 by Beverley De-Gale and Orin Lewis, the parents of former Leukaemia sufferer Daniel De-Gale. When Daniel was diagnosed in April 1993 he was less than a week away from certain death and was immediately put a 2 year course of Chemotherapy. But after being in Remission for 9 months he relapsed in December 1995.
By way of background, and to highlight why this recruitment is so important, when the charity was set up, Daniel had already been suffering from Leukaemia for 3 years. However shortly before the conception of the charity, Daniel's parents were informed that Daniel's only hope of survival was to receive a bone marrow transplant. Due to the fact that bone marrow contains racially specific characteristics, the compatible donor for Daniel could only be found within the black or mixed race population. At the time when this shattering news was revealed, there were around 285,000 registered potential bone marrow donors in the U.K.
Unfortunately, approx. only 550 were black or mixed race.
The consultant, Dr Paul Veys, at Great Ormond Street Hospital who was responsible for Daniel made it quite clear to the parents that there was only about a 1 in 250,000 chance of Daniel finding a compatible donor and not only in this country but in the USA as well. This was due to the low numbers of the Black community on the register. If he were white it would be closer to 1 in 5. So of course she asked the question what if a sufferer does not have a sibling or family member that is a good enough match what happens?
The answer was staring her in the face.
That was all Beverley needed to hear. The ACLT originated from what was initially called The Daniel De-Gale Support group. Some family and friends all got together and decided to do something about the poor representation of the Black community on the UK Bone Marrow register. Beverley kicked off our campaign in March 1996 by making a heartfelt speech at the Spot Club, in London's Soho area. The speech was filmed by Carlton TV for a documentary called "Looking for the Match" which also highlighted Daniel's perilous situation.
She also started undertaking many TV, Radio, and Newspaper appeals. Beverley also bravely went to many Black Theatre productions including the very 1st at the Hackney Empire on Friday 3rd May 1996. It was after a performance of Independent Black Women and in front of over 500 people that Beverley, with Orin by her side and Daniel in the audience, made a very emotional appeal to the audience about the need for Black people to help one another in a very positive way and to come forward and Register as potential Bone Marrow Donors. Amazingly, 63 Black people queued up in the cold until 01:00am to donate blood and join the Anthony Nolan Register. This historic positive response from the Black community was discreetly filmed by the BBC as a pilot for their new flagship program "Black Britain" and aired on Tuesday 9th July. The show highlighted Daniel’s story. In addition it showed that many others on the night took application forms away with them to fill in at a later date. By the end of the evening of the screening 170 direct enquiries for application forms via the Telephone Helplines had been received.
Daniel himself made appeals on the TV, and Radio. On the back of all her tireless work in June 1996 we were able to hold a fundraising do at the Granaries nightspot in Croydon. We managed to raise enough money to kick off the ACLT. But Beverley did not rest on her laurels. Because of the intense media coverage she had created other Black and Mixed Parentage families came forward and asked the ACLT and Beverley to try and find a matching donor for their loved ones. In 1996 we arranged many Bone Marrow clinics mainly in the London area, and 4 in Birmingham. It had taken the Anthony Nolan Trust over 24 years to register 550 Black people due to indifference, miscommunication and misconceptions. In just 11 months we raised the register from 550 to about 2,500. Not bad but it could have been a lot better. But all this could not be achieved without Beverley being the spearhead and focal point of the raising awareness campaign.
In October 1996 the ACLT was awarded a Registered Charity status from the Charity Commissioners for England and Wales and in January 97 we had some additional good news when we received a 1 year grant from the National Lottery Charities Board. Daniel experienced many problems during his prolonged courses of treatment and missed large chunks of his schooling. Despite these problems he never complained and was always a tower of strength to his family. Meanwhile Beverley just continued on with the demands of the cause and still being a great Mother not only to Daniel, making sure he covered all of his schoolwork at home/hospital, but also to his younger sister Dominique. This despite undertaking a full time job
The ACLT is a voluntary charity, whose main aim is to increase the number of Black and Mixed Parentage people on the UK Bone Marrow Register. The members of the ACLT freely volunteer their time in attempting to raise awareness in the Black community; enabling potential donors to come forward and be involved in the process of offering hope and a healthy future to someone whose disorder may otherwise prove fatal. The likelihood is that finding a matching donor is considerably greater in donors from the same ethnic background. A simple blood test will put you on the confidential register and if you ever match with a patient you will be selected for further blood tests. Bone Marrow is a blood like liquid, which can be donated by one person under general anaesthetic and transplanted into another person in a simple procedure. The donors body quickly replaces the donated marrow without any lasting effect. A persons tissue type is an inherited characteristic which is passed on from parents to their children and research has shown that the chances of finding a matching donor for a patient is GREATER if the donor is from the same Racial/Ethnic background and descent. Therefore it would be unlikely to find a match for an African, African American or African Caribbean patient from a largely Caucasian register. Similarly, an Asian patient would be more likely to find a match from within the Asian community, and so on.
This involves organising and conducting numerous recruitment registration clinics throughout the UK, specifically in predominantly Black populated cities and towns. The greatest example of the importance of our work, alongside the Anthony Nolan Trust, became evident in April 1999 when Daniel's parents were informed that a matching unrelated donor had finally been found. On 16th June 1999 12 year old Daniel finally received what he deserved, a bone marrow transplant at Great Ormond Street Hospital. Six years on and Daniel has regained a lot of his strength and pursues as normal a life as any 18 year old that has undergone what he has had to endure.
The ACLT has also been instrumental in the process of registering at least 20 black/mixed race donors who have donated Bone Marrow/Stem Cells to unrelated sufferers over the last 12 years. The ACLT also provides moral support and assistance to Black and Mixed Parentage people suffering from Leukaemia and any other bone marrow related illnesses such as Aplastic Anaemia, as today there are still many diagnosed sufferers urgently requiring a transplant. Many sufferers contact the ACLT from the Caribbean and Africa asking for assistance in helping to raise funds for their treatment or to recruit more potential donors within the UK to determine if any matching donors can be found on their behalf.
The charity is also involved with raising awareness and recruiting potential donors from many influential organisations such as the Fire Brigade, HM Prison Service, Black Police Association, Colleges and Universities. Leukaemia affects both Black and White people but unfortunately in the Black community it is not thought of as a Black illness in the same way Sickle Cell Disease, High Blood Pressure or Lupus has been. Black sufferers who need a Bone Marrow Transplant for example are at a disadvantage due to the lack of awareness of the problem in the community and consequently lack of suitable Black donors.
People of African, African American, African Caribbean, and Mixed Race descent between the ages of 18-50 have to face up to the fact WE are the only ones who can be potential donors for Black sufferers who require a life saving Bone Marrow match. BUT HOW MANY OF US HAVE ACTUALLY REGISTERED? What has happened to the 10,000 - 15,000 application forms that were sent out by the ACLT between 1996 to 2003? What happened to the forms sent out by the Anthony Nolan Trust? Only approx. 30,000 out of a register of approx. 850,000 on the four UK Bone Marrow and Cord Blood registers. This needs to be more in line with the proportion Black people in the United Kingdom. Our ultimate aim is to increase the number of Black, Mixed Race on the UK register to at least 60,000 due to the vast diversity between us as people of African descent.
This will in turn help all sufferers and their families in the UK, and particularly the Caribbean and Africa not to endure the plight of pain and agony like many sufferers have had to in the past. There are many other sufferers fighting with tremendous courage and strength. We would like to observe that their battle will not be in vain.
