Special Named Funds support vital new leukaemia research

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Children’s Cancer and Leukaemia Group (CCLG) is delighted to announce two new research projects that will help further understanding of childhood acute lymphoblastic leukaemia (ALL).

The two projects are led by Professor Anindita Roy, from the University of Oxford, and Professor Anthony Moorman, from Newcastle University and are funded by families affected by childhood cancer through CCLG’s Special Named Fund programme.

Ruby’s ‘Live Kindly, Live Loudly’ Fund, Fred Bennett’s ‘Don’t Look Down’ Fund, Elin’s Sparkle Fund, Toti Worboys Fund, Josh’s Gold Star Fund, The Harley James Reynolds Fund, Thomas Fight TALL, Ariana’s Rainbow Friends and Seren’s ALL Stars have all contributed to the projects that will improve understanding of why ALL can be so hard to treat.

Although treatment has progressed over the last 40 years so that nine out of 10 children with leukaemia now survive, there are still patients whose cancer comes back or doesn’t respond to treatment. These cases are classed as ‘high-risk', and doctors need to know more about how this happens and why.

Professor Roy’s project, titled ‘Understanding molecular mechanisms that drive high-risk childhood acute lymphoblastic leukaemia (ALL)’, aims to find out how certain genes make ALL resist treatment or come back after treatment (relapse).  

She said: “It is often difficult to cure patients once they have relapsed, so we need a better understanding of the mechanisms that make these leukaemias high-risk in order to develop effective treatments.”

With her team at the University of Oxford, Professor Roy has found genes that leukaemia cells need to survive. In this project, she will look at how the cancer cells behave with and without these genes. This will show exactly how the genes allow the leukaemia to relapse and resist treatment.

She said: “As a clinician myself, I never lose sight of why we are doing the research - always for the benefit of the children affected by leukaemia.

“We hope that our efforts will eventually lead to a meaningful improvement in survival and quality of life for children with high-risk leukaemia.”

Professor Moorman hopes his project, titled ‘‘Long-term outcome and risk factors among children and adolescents with ALL high-risk genetics’, could help doctors decide which patients need stronger treatments and which could safely have less treatment.

Professor Moorman said: “In the past, patients with high-risk ALL have been treated with high-dose chemotherapy and sometimes transplants. This improved outcomes for many of these patients, but the strong treatment can have serious long-term side effects.

“We need to understand more about factors that put a child at risk of relapse so that doctors can decide the best treatment for each child.”

His team at Newcastle University will be looking at a huge collection of patient data, which spans 30 years, held by the Leukaemia Research Cytogenetics Group to find out which factors, like a patient’s age at diagnosis or their treatment type, could be used by doctors to predict the severity of a patient’s leukaemia or likelihood that it will relapse.

These new projects are the first funded by the Harley James Reynold Fund. Harley was 18 months old when he was diagnosed with ALL, and he passed away just four weeks later. Harley’s mother, Chelsie, decided to set up a Special Named Fund at CCLG in Harley’s memory to fund research into childhood leukaemia.

Chelsie said: “Harley was unfortunately one of a small percentage to lose his battle to childhood leukaemia, especially so quickly. He fought as much as he could and will always remain our hero.

“We chose as a family to set up the Special Named Fund to help support research to prevent families going through a tragic loss like us. No family should have to watch their child die.”

Talking about the new projects, Chelsie said: “It’s amazing to now see where the money is going, and being able to read about the new projects Harley’s fund has supported.”

Josh Harber’s family also started fundraising for their Special Named Fund, Josh’s Gold Star Fund, after the death of their nine-year-old son from acute myeloid leukaemia.

Danielle, Josh’s mum, said: “We lost Josh very quickly from diagnosis - it literally came out of nowhere.

“To know this can happen and literally destroy a family so quickly, with no warning, really made me want to help fund research that might stop this happening to another family.”

Reflecting on helping fund these vital new studies, Danielle said that kind-hearted Josh would be very proud to be helping change the future for other children with cancer.

She said: “I'm so happy that Josh's fund has supported these projects. Josh would do anything for anyone and was always a caring soul that would want to cheer anyone up who was upset or hurt, so I know that he would be feeling very proud of helping fund these projects!”

Talking about receiving funding from the Special Named Funds, Professor Moorman said: “I have been funded by national and local charity money for the past 30 years. None of the research my team has produced would have been possible without the generosity and determination of people like yourselves – thank you.”

Ashley Ball-Gamble, Chief Executive at CCLG, said: “We are delighted to have funded two new research projects with the help of our Special Named Funds.

“These vital projects will help us understand more about why ALL is sometimes so hard to treat. Only by understanding this can researchers find new, safe and effective treatment options.”