Children’s Cancer and Leukaemia Group (CCLG) has funded two new rhabdomyosarcoma research projects, thanks to several of its Special Named Funds.
Pass The Smile For Ben, Be More Ruby, Just George, Team Jake, Jacob’s Join, Hattie’s Rainbow of Hope Appeal, Cohen’s Fight and The Jenni Clarke Fund have all supported the new research.
Led by Professor Janet Shipley, at the Institute of Cancer Research, and Dr Darrell Green, at the University of East Anglia, the new projects aim to improve the treatment and care of young rhabdomyosarcoma patients.
Professor Shipley hopes to find a better way to predict how aggressive rhabdomyosarcoma will be at the time of diagnosis, so all patients receive the right amount of treatment. Currently, it can be difficult for doctors to know how best to treat certain patients because there is no way to assess how intensive their treatment needs to be.
She said:
This project aims to identify markers that can identify rhabdomyosarcoma patients that are at greater or lesser risk of succumbing to their disease with current treatments.
The research team has already found markers that are only found in certain conditions in tumours, like low oxygen levels. In this project, they will test which of these markers is best able to predict risk for patients. This could one day improve the treatment and care of high-risk patients and spare low-risk patients extra toxicity.
Prof Shipley added: “We are very excited to pursue our research using the state-of-the-art technology and analyses that we have established. We really hope and expect this will improve the outlook for future rhabdomyosarcoma patients.”
Dr Green’s project focuses on the fusion-positive type of rhabdomyosarcoma, a type where patients have one of two mutant genes.
He said:
Our project is intended to understand the finer details of rhabdomyosarcoma genetics so that we can eventually develop new medicines that target specific abnormalities. This approach means that medicines will be both more effective and gentler on the rest of the body.
His team recently discovered that the 3D structure of the mutant gene's instructions, called RNA, is really important for cancer development, behaviour and responses to treatment. In this project, Dr Green will look at what difference the 3D shape makes to the gene and to different patients.
He is especially grateful to the families who have funded his work:
This project has only been made possible because of the unimaginable heartbreak that some families have gone through and their tireless efforts for scientific research. I just cannot say ‘thank you’ enough.
This project has only been made possible because of the unimaginable heartbreak that some families have gone through and their tireless efforts for scientific research. I just cannot say ‘thank you’ enough.
Scott and Sarah Crowther set up Pass The Smile For Ben as a Special Named Fund at Children's Cancer and Leukaemia Group (CCLG) to raise money for much-needed research into rhabdomyosarcoma after their son ben died in 2019, having been diagnosed just a year earlier.
Scott and Sarah said:
It fills us with pride to fund any new research that will lead to more effective and kinder treatments for future patients.
Ben would have thought it was beyond epic that Pass The Smile For Ben part-funded these projects.
It is a testament to our wonderful friends, family and community that they continue to remember Ben with their fundraising, and we are very grateful for their support.
Dr Green wanted to highlight Scott’s involvement with his project. He said: “We’ve also been incredibly fortunate to involve Ben’s father, Scott, as part of the official research team.
“His input and expertise from a parent perspective will make sure that our research has direction and relevance to those factors that are so important to families. This ensures that we do not become contained within a research ‘bubble’ where we risk losing seeing the bigger picture.”
In 2020, when aged just four, Cohen Earley was diagnosed with stage four alveolar rhabdomyosarcoma and began intensive treatment in the midst of the COVID-19 pandemic. Kat and her sister-in-law Alicia set up Cohen's Fight as a Special Named Fund not long after.
Kat said: “We set up Cohen’s fight as we knew people needed more awareness about rhabdomyosarcoma - both so it could be detected sooner, for all those children who did not get their treatment soon enough, and to push for much kinder treatments, because of the long-term effects that still impact Cohen’s health today.”
Kat and her family are delighted to have funded the new projects, which has only been possible with fundraising from their loved ones.
She said: “We are extremely excited and proud to be supporting the two new projects - they cover the exact reasons why we set up Cohen's Fight four years ago.”
Sarah Evans, Head of Research at CCLG, said:
We are incredibly moved by our Special Named Funds’ dedication to funding research and raising awareness of childhood cancer. Thanks to their dedication, and the support of their communities, we can support pioneering projects like these.
Find out more about Prof Shipley’s project, titled ‘Predicting high-risk rhabdomyosarcoma at diagnosis to improve outcomes for children and young people’, here.
Find out more about Dr Green’s project, titled ‘Investigating the shape of fusion genes in rhabdomyosarcoma’, here.