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Friends of

Research collaboration with Neuroblastoma UK

Friends of Rosie have partnered with Neuroblastoma UK to fund new research to improve treatment for children with advanced neuroblastoma.

Neuroblastoma is a rare type of childhood cancer. Around 100 children are diagnosed with neuroblastoma every year in the UK. Children with aggressive high-risk neuroblastoma are treated with incredibly intensive drugs and invasive procedures that can leave them with lifelong disabilities. And because they have an increased risk of relapse, the long term outcome of these children desperately needs to be improved.

Professor Louis Chesler will receive a research grant of £469,093, which includes a donation of £15,000 from Friends of Rosie. The grant will enable the research team to progress their research and develop safer, non-invasive and more effective treatment for children with the disease.

Professor Chesler’s research aims to develop blood-based biomarker tests for children with high-risk neuroblastoma, to help guide and monitor treatment.

Lisa Larkin, Founder and Trustee of Friends of Rosie (and Rosie’s mum) said, “For Friends of Rosie this particular research has extra resonance as Rosie, our charity’s namesake and my daughter, had neuroblastoma. I remember so clearly being given the diagnosis and prognosis that she would die in the same sentence. There seemed to be a lack of priority for childhood cancer research and treatment. That’s why we started Friends of Rosie – to pump prime vital new research to help children like Rosie. 30 years later we are delighted to collaborate with Neuroblastoma UK in this most exciting new project.”

About the research

Professor Louis Chesler, Professor of Paediatric Cancer Biology at The Institute of Cancer Research said, “To treat a child with neuroblastoma more effectively, we first need to understand how aggressive their cancer is or whether they are at greater risk of relapse. Currently the only way we can get detailed information about their tumour is from tissue biopsies, which are invasive and potentially dangerous. We do this in order to analyse tissue samples for molecular changes or ‘biomarkers’. These biomarkers help us to diagnose the cancer and guide a child’s treatment.

“The medical technology now exists to detect multiple biomarkers in blood quickly and accurately, which could spare children from having to undergo painful tissue biopsies. But as yet, none of our standard clinical trials implement any blood-based testing, or molecularly guided drugs. This is a critical failure in modern clinical trial design that we wish to eliminate through our proposed work.

“Before we can bring these blood-based tests to trial, we need to formally evaluate the technology to determine its power and accuracy. We also need to cross-compare the various test types against each other to understand what they can and cannot measure. The research grant from Neuroblastoma UK and Friends of Rosie will enable our team to investigate blood samples and data from different biopsy techniques across three international research centres. Once we’ve completed our evaluation, we can then propose a less invasive method of diagnostic testing for children with this aggressive cancer.

“Thanks to donations from members of the public, we are able to continue our research work to move potential less invasive treatments from bench to bedside, a vital step in finding a cure for this rare childhood cancer.”

Nancy Dykes

Nancy Dykes

Nancy, 11, was diagnosed with rhabdomyosarcoma when she was just 2 years old. She was treated with Proton Beam Therapy (PBT) in Germany but unfortunately relapsed less than a year later. The family were then sent to Germany for a second round of PBT. Although treatment helped to cure Nancy’s cancer, she has been left with lots of lasting effects which will require ongoing treatment throughout her life. Here Nancy and her mum, Antonia, share their story in the hope it will help others, raise awareness, and raise more money for children’s cancer research.

Prof John Hickman

Prof John Hickman

Why I am a Trustee of CCRF
 
I am a relative of the Larkin family and knew Rosie Larkin ( Friends of Rosie, now CCRF) when she had and then died of neuroblastoma, aged six. At that time, I was a scientist and professor at Manchester University, actively working on the problem of why some cancers do not die despite intensive and toxic therapies.  Seeing Rosie during her unsuccessful therapy and then attending her funeral, besides being emotional, drove me to double down on my own research as well as to support the Charity as best I could as a cancer researcher. I spent over a decade as the Chairman of the Scientific Advisory Board of the CCRF, when the Board moulded policies to ensure that funds raised for research into childhood cancers were distributed only to clinicians and researchers who had the brightest ideas that could impact of cancer medicine for children.
 
My role on the Board
 
As a Trustee,  I hope that my many decades of experience in cancer research and medicine can help the CCRF determine where best the funds that are raised can be invested in cutting edge research and medicine. I am also keen that the CCRF brings together UK and international experts in science and cancer medicine to brainstorm on how best to advance the treatment of childhood cancers.
 
My Background
 
I was a Professor of Pharmacology at Manchester University, working on drug resistance in cancer. I then moved to Paris, where I still live, to head cancer drug discovery at a French pharmaceutical company (Servier). I then headed an EU consortium for six years that brought together researchers from the pharmaceutical industry, universities and biotechnology companies, from all over Europe and the UK, to improve cancer drug discovery. I continue to be active in cancer health policy, publishing in the medical literature.
Katrina

Katrina London

Why I am a Trustee of CCRF

I have spent my professional career representing individuals and families affected by the devastating asbestos-related cancer, mesothelioma, which has no cure and for which there are only a limited number of palliative treatments available on the NHS.

I joined CCRF because I wanted to bring my understanding of the need to raise awareness of less well known cancers and passion for the need to secure improved funding for research to children facing a cancer diagnosis.

My role on the Board

I am responsible for oversight of our collaboration agreements with other charities to co-fund research into cures and treatments for childhood cancers. I also manage our challenge events and help with community fundraising. 

My Background

I am a Senior Associate at Irwin Mitchell LLP and specialise in Asbestos Disease Litigation, acting on behalf of victims of asbestos related diseases and their families.  Over the years, I have undertaken a number of fundraising challenges to raise money for cancer research, including a 1000 mile cycle ride from Glasgow to Southampton.   

Carla

Carla Nuttall

Why I’m a Trustee of CCRF
 
I became a trustee of the Children’s Cancer Research Fund because I believe every child deserves the chance to grow up healthy and with everything to look forward to in life. Like many people, I’ve seen the impact cancer can have on families and I wanted to do something that could make a real difference. This started through my work as an ambassador for Cyclists Fighting Cancer, which supported young people and their families in finding strength, confidence, and joy through movement.
 
That experience shaped my understanding of the challenges families face and the importance of community-led support – but crucially, the clear need for that to go hand-in-hand with targeted research and long-term solutions.
 
This is why I’m so passionate about the work CCRF does and proud to contribute to a cause that gives children and their families, the greatest chance of living a life without limits.
 
My Role on the Board
 
I support CCRF’s mission by bringing my experience in brand, marketing, and communications to the board. My focus is on helping CCRF tell its story in a way that resonates with people – whether that’s families, researchers, donors, or the wider public. I work alongside an incredible team to strengthen CCRF’s voice, build trust, and grow awareness so that more children and families can benefit from the breakthroughs we’re helping to fund.
 
My Background
 
I’m the Executive Director of Corporate Affairs and Marketing for The Growth Company, a social enterprise dedicated to helping people, businesses, and places to thrive through its market-leading insight, employment, skills and business support.
My passion is to help the organisations I work with to communicate with clarity, purpose, and integrity. That’s why I’ve spent my career in strategic communications supporting organisations that want to make a positive difference – CCRF could not fit my sense of purpose any better.