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Friends of

Could a blood test diagnose Ewing Sarcoma?

Friends of Rosie has joined forces with another like-minded charity, Megan’s Rose of Hope, to fund research into the use of a revolutionary new blood test to diagnose Ewing Sarcoma, a rare type of bone cancer. In 1 in 4 children or young people with Ewing Sarcoma there is little chance of survival because the cancer has already spread by the time it is detected with present methods.

We have jointly awarded £70,000 for a second year of research looking for a reliable diagnostic blood test. The first year’s research was also funded by Friends of Rosie in partnership with another children’s cancer charity, The Bradley Lowery Foundation.

The research is taking place at the Manchester Cancer Research Centre and The Christie Hospital in Manchester. The research team includes specialised biomarker researchers, Professor Caroline Dive and Dr Dominic Rothwell, with Ewing Sarcoma focussed clinician, Dr Martin McCabe.

Ewing SarcomaSays Friends of Rosie Trustee and Ewing Sarcoma survivor, Mahesh Vara, “This is such an exciting research project, and one close to my heart. It potentially provides an invaluable pathway to early diagnosis, and on-going monitoring, whilst avoiding the trauma of invasive biopsies.”

Paige MorleyAdds Paige Morley, Charity Chair at Megan’s Rose of Hope, “We are incredibly honoured and grateful for the opportunity to be a part of this research project with Friends of Rosie. Megan’s wish was to help others who have been diagnosed with cancer and we know that Megan would be so proud to be a part of making a change. Our thanks go to all those who have raised and donated funds to support this project. We are excited to see what comes from the research and we hope it can make a difference to young people with Ewing sarcoma in the future.”

About Ewing Sarcoma
Ewing Sarcoma occurs in around 100 people per year in England. It peaks during adolescence and early adulthood and is the second most common bone cancer of children and young adults.

The survival rate of children and young people with Ewing Sarcoma has changed little in the last 40 years, despite multiple clinical trials. Major factors resulting in poor survival and lack of progress are largely due to early symptoms being non-specific, therefore tumours are frequently large and inoperable at the time of diagnosis. At present, in one in four patients, the disease has already spread to other parts of the body by the time it is diagnosed.

Blood test diagnosis
This research project is looking at the development of a reliable diagnostic blood test to diagnose people earlier with smaller tumours before they have spread. Currently, patients rely on invasive, often painful, tumour biopsies which provide only limited samples and are difficult and expensive. A blood test could instead identify quickly whether treatment is working rather than spending months giving ineffective chemotherapy. It would also be a reliable and less invasive way to monitor for disease relapse and enable earlier intervention.

About Megan’s Rose of Hope
MeganAt the age of 18, Megan was diagnosed with stage 4 Ewing Sarcoma after two years of being unwell and numerous visits to doctors and health care facilities. Megan underwent the most brutal chemotherapy the NHS can offer, as well as an eight-hour surgery, in which she lost one of her kidneys and her tumour was removed. Her chemo was so brutal her body struggled to recover, and she required blood transfusions, several rounds of antibiotics and emergency admissions.

On 4th July 2020, Megan was was told the amazing news that she was cancer free. But sadly, only three months later, her cancer returned, more aggressively that before and she was now terminal. She was given a year. She died 7 weeks later with her incredible mam and dad next to her giving her all the love anyone could have.

Megan’s Rose of Hope, based in Newcastle-upon-Tyne, was established as a charity in 2022 with the mission to provide awareness, information, and a network of support for young people aged 11-25 diagnosed with cancer in the UK. The charity also aims to fundraise for vital research into cancers that affect children and young people.

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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.

Watch Story
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.