Funding emergency hits specialist leukaemia trust, seriously affecting East London patients

If it doesn’t raise £80, 000 by the end of March, the African Caribbean Leukaemia Trust (ACLT) will have to close and Mr. Cyril Onyejekwe may lose access to vital treatment, which could save his life. 

He has myelofibrosis and he urgently needs a bone marrow transplant, but after five years of looking he still hasn’t found a match.

Mr Onyejekwe is a father of six, an engineer and a lover of classic cars. After he was diagnosed with myelofibrosis in December 2005, doctors told him he would only live between two and five years more, unless he had a bone marrow transplant.

Doctors tested his family in the UK and Nigeria for a suitable match, but without any luck. They even looked for a possible donor on UK and international Bone Marrow Registry, but found nothing.

Bone marrow has racially specific characteristics, but as so few Black African and African Caribbean donors are registered, Mr Onyejekwe’s chance of finding a suitable transplant match are significantly lower than someone from white British heritage: around one in 100, 000. There are 24 times more white people than black people registered on UK Bone Marrow Registries.

He realized that his only option was getting more African men and women to register as bone marrow donors. That was when he found out about ACLT.

ACLT is the leading charity in the UK specifically dedicated to increasing the number of black, mixed race and minority ethnic donors on the UK’s Bone Marrow Registries. It was founded in 1996 by Beverley De-Gale and Orin Lewis, whose son had leukemia, and over the last 15 years it has raised the number of people registered from 550 to 35, 000.

Thanks to them, many people have been saved. Sarah Thompson is one of them. She received a match in 2006 and says that she will feel forever in debt to ACLT: “Without it I probably would not be alive today.”

But now ACLT is facing an economic crisis. It relies on public donations and project grants and receives no cash from the government.

An ACLT spokesperson said: “Virtually all of our income comes from public donations and proactive and reactive fundraising initiatives.”

But this year their applications for long term funding were declined and they are getting fewer donations than ever. This puts the organisation in a critical position. They need to raise £80, 000 by the end of March just to keep going until September, when they will need to apply for further sources of funding.

ACLT said: “We are pleading to the public for donations to keep ACLT alive. Together we have helped to save lives and this work is now in severe jeopardy. The future health of all patients and their families we support now and those who will need our help in the future will endure more heartache.”

One of those patients is Mr. Onyejekwe. His wife Janet is now an ACLT Administrator and they are both worried about the current situation. “My life now is in parallel to the ACLT. If it closes, what chances do I get?” said Mr. Onyejekwe.

Mrs Onyejekwe said: “This is not just about Cyril, is about all the black, Asian or mixed raced people that could need a bone marrow transplant one day. You never know what may happen. Cyril used to be a healthy man. ACLT is like a family and we are here to help everybody who may need it.”

Angela Xavier knows about that. Her daughter Carena is half Ghanaian, quarter Nigerian and quarter Italian, which made it impossible to find a bone marrow match when she needed a transplant.

She is currently in remission after receiving an autologus bone marrow transplant in February 2008. This means that she received her own stem cells back after they had been treated to remove the cancerous cells. But she still has a 50 per cent probability of suffering from leukemia again.

That`s why her mother feels she needs ACLT: “They are going out to the public, they appeal to them to come forward to register as donors. They also helped me with advice. They are someone to talk to, someone to cry with. They gave me emotional support, even until now. We can´t allow ACLT to close because of a lack of funding. When I think of the stupid things which people spend their money on, it makes me want to cry.”

To make a regular or one-off donation to ACLT see this page and click on the flashing links on the right hand side of the page:

or here

Donate £3 by texting ACLT to 70300 for terms go to:

Bring cash in person or post a cheque payable to ‘ACLT’ to ACLT, to Southbridge House, Southbridge Place Croydon Surrey CR0 4HA

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