Special Named Fund helps CCLG fund new ependymoma research

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Children’s Cancer and Leukaemia Group (CCLG) has funded a new research project which aims to find a faster way to detect relapse in an aggressive type of brain tumour. 

The project has been supported by the CCLG Special Named Fund Little Lady A, set up in memory of one-year-old Adeline Evans. 

 

Titled ‘Detecting lingering brain cancer cells before a tumour grows back’, the project is led by Dr Alison Whitby, part of Dr Madhumita Dandapani’s research group at the University of Nottingham.  

Dr Whitby hopes to identify molecules, called biomarkers, in fluid samples from around the brains of ependymoma patients. If she can find biomarkers that are only present when there are living ependymoma cells, she can use them to create a diagnostic test that can identify relapsed ependymoma sooner.  

If Dr Whitby and the team can create a test that shows whether ependymoma has grown back after treatment, researchers could finally test whether earlier treatments improve survival.

Dr Whitby explained:

I am working on a new method to monitor relapse in children’s ependymoma brain tumours. If we could detect relapses early and reliably, it would enable children to start another round of treatment faster.

I very much hope that I can generate a test that will be useful and invested in so that it becomes used in the NHS and further afield. I do this work because there is a possibility of it benefitting children with brain tumours.

I am humbled to be granted the funding from fundraising in memory of Adeline and hope I can help her memory live on by helping future children.

Adeline was just three-and-a-half months old when she was diagnosed with ependymoma in November 2020. Despite four brain surgeries and months of chemotherapy, Adeline passed away at home 18 months later, in May 2022. 

 

Determined to make a difference to other families facing the same diagnosis in the future,  her mum, Katie, and her dad, Rob, set up Little Lady A in November 2022 to raise funds for much-needed research into ependymoma.  

Katie said:

We chose to set up Adeline's Special Named Fund as we wanted to keep her memory alive.

We wanted people to continue saying her name. What better way to do that than to raise money to fund research that will help find a cure for this awful disease?

It is a proud moment to know that the fundraising done so far by us, and family and friends, has given researchers the opportunity to research ependymoma further.

Had there been a faster way to find out if a child had relapsed when our daughter was still with us, we might have had more time with our precious Little Lady A.


 

 
*The ependymoma cancer samples needed for this project have been provided by the VIVO Biobank, as part of a new collaboration with CCLG. The biobank, co-funded by Cancer Research UK and Blood Cancer UK, stores the majority of children’s and young people’s cancer samples in the UK.  

 

 Find out more about the project