Children’s Cancer and Leukaemia Group (CCLG) is proud to announce its first research project into Langerhans cell histiocytosis (LCH), a rare type of cancer that affects just 50 children per year in the UK.
Funded by CCLG Special Named Funds Jack's Journey, the Isobel Parmenter Memorial Fund, Danny’s Dandelion Appeal and #TeamNimmy, the new project will help researchers understand why some children’s nerves stop working years after a LCH diagnosis.
The project, titled ‘Why does neurodegeneration occur in Langerhans cell histiocytosis?’, is led by Professor Matthew Collin at Newcastle University. His team will investigate why nerve cells slowly lose function and die in some LCH patients, in a condition known as neurodegeneration. He said:
Neurodegeneration remains very poorly understood and there is often no effective treatment. We hope to solve a fundamental question about the cause of it, by discovering how the mutations that cause LCH get into the brain. This will help us to search for new and effective treatments.
Prof Collin will be looking at patient blood samples to pinpoint when the LCH mutation first occurs, which will allow his team to choose between two competing theories of why neurodegeneration happens.
If successful, this project will give the first real insight into why neurodegeneration occurs. This could make a big impact for children with LCH and their families, as it could provide the foundations for future treatment strategies to prevent neurodegeneration.
Prof Collin added: “I’d like to say a huge thank you to the families who have funded our work. “It’s exciting when projects like this one are funded. We think it will make a real difference – it’s ambitious, but this is how we make breakthroughs.”
Suzanne and Michael Parmenter set up the Isobel Parmenter Memorial Fund, which part funded Prof Collin’s project, in memory of their daughter. Isobel was just 19 months old when she was diagnosed with LCH and, despite undergoing three courses of chemotherapy, she passed away just over two months later. Suzanne said:
Isobel was diagnosed with LCH in August 2014, and on 5 October 2014 we made the worst decision any parent has to make and agreed to take Isobel off the ventilator. She passed away in her mummy’s arms holding her daddy’s hand, only 22 months old, after putting up a lengthy, brave and courageous fight for life.
Through Isobel’s fund, they want to keep her memory alive and provide hope to families like theirs by raising money for much-needed research into LCH.
Suzanne said: "We set up the Isobel Parmenter Memorial Fund in 2015 to fund research as a way to channel our grief into something positive.
“We’ll never hear Isobel’s giggle again, we’ll never watch Isobel grow up and become the strong, confident woman we know she would have been and worst of all, we’ll never see her play with her younger brothers. But her life will not have been in vain.”
Ashley Ball-Gamble, Chief Executive of CCLG, said:
We’re proud to work with families like Isobel’s to fund research into cancer types that are often overlooked. Whilst LCH is a rare cancer, it can devastate families and desperately needs research into effective treatments.
Professor Collin's work is tackling one of the more challenging questions of LCH, the gradual death of nerve cells. This project will answer questions about the cause of neurodegeneration that will provide foundations for research into targeted treatments.