It is hard to believe that it is now 2024 – it seems like only yesterday that I was writing a blog about 2022’s highlights!
Nevertheless, we got a lot done last year and I wanted to share with you what your support has achieved in 2023. Before I do, I need to say thank you for your support during the past year. Whether you have fundraised, donated, raised awareness, or even just retweeted – it all makes a difference. So, let’s look at what you have helped achieve!
Over 30 research projects funded
A fantastic 31 projects were funded through the CCLG Research Funding Network in 2023, totalling almost £6 million. This significant amount of funding allowed us to fund our first research projects into some rare and hard-to-treat cancers, including germinoma brain tumours, Langerhans cell histiocytosis, and juvenile myeloid leukaemia.
Collaboration is key
Of course, we couldn’t have done it alone. As the experts for childhood cancer, we use our established research funding process to help other charities fund research. In 2023, we are proud to have worked with four other childhood cancer charities: Candlelighters, Young Lives vs Cancer, The Harley Staples Cancer Trust, and The Little Princess Trust (LPT).
Our long-standing partnership with the LPT, who have funded over £22 million in research through CCLG, was highly commended at the 2023 Third Sector Awards.
Ashley Ball-Gamble, CEO of CCLG, said: “We’re delighted that our partnership with The Little Princess Trust has been recognised for its impact in enabling ground-breaking research to be funded more quickly, and without the duplication of time and resources. Our position as the experts in childhood cancer makes us ideally placed to support and administer the LPT’s extensive research funding portfolio.
“The partnership is key to both our long-term aims and allows more high-quality research to be funded. By working together, we are stronger, and through collaborations such as this, we can achieve our goals quicker, and ultimately help shape a brighter future for children with cancer.”
Involving patients and their families
We believe that parents and families are a vital part of research – their lived experience can help researchers understand the issues facing children with cancer, and what might make the most practical difference to patients.
Our Patient Public Involvement group review all of our research grant applications and provide feedback to researchers about what they should improve, such as how to demonstrate impact or share their work with families. Another vital part of our research is the Special Named Funds. Families can set up these funds in their child’s name to fundraise for research into a specific area.
When I started at CCLG in 2019, we had just under 60 Special Named Funds. Now we have almost 100 families currently raising money for research, some of whom get involved with research as parent representatives. They are all motivated by their experiences of childhood cancer and want to make the future a brighter place.
Through years of hard work and dedication, our Special Named Funds have supported almost £2.5 million in research so far, with £600,000 spent in 2023.
We held our first Research Discovery Day in September, which was dedicated to sharing research with parents and families and empowering them to get involved. Five expert researchers came to Leicester Museum & Art Gallery to share their work with parents and families, and the day opened with a talk from one of our Special Named Fund parents. Emma Jones, from Ruby’s ‘Live Kindly, Live Loudly’ Fund, talked about her overwhelming love for her daughter, and how she had to find a way to channel that after Ruby passed away from T-cell acute lymphoblastic lymphoma.
Finding out top priorities for research
Our focus on including parents in research led to us part-funding a Priority Setting Partnership that would gather the views of patients, families, professionals and survivors to identify gaps in research and ‘unanswered questions’. This year, we published the final report from this project, listing the top 10 research priorities for children’s cancer.
Historically, what research is carried out has been down to what researchers and doctors think is important to learn more about, and what funding is available. This report is an exciting milestone because it reflects the priorities of children and families.
One of the key themes for the priorities was around side effects and late effects (the long-term side effects of cancer and its treatment). Because of this, we chose to raise awareness for late effects for childhood cancer awareness month this year. Our survey showed that nearly two thirds of survivors have issues with their mental health, and identified 16 common health problems in childhood cancer survivors. This clearly demonstrates the importance of filling this research gap and we are working to make sure every child can live a long and healthy life, free from the effects of cancer or its treatment.
Our own dedicated experts
We wouldn’t be the experts in childhood cancer without, well, the experts! From our members, who care for children with cancer, to our researchers, none of our work would be possible without their support. I couldn’t do my job without the dedication of these fantastic experts, who give up their own time to host webinars for families, host lab visits, and answer my questions about their projects.
As we begin 2024, we remain committed to advancing childhood cancer research with your continued support. Together, we can work for a future where every child has a happy and healthy future.
Read next: What are the top priorities for childhood cancer research?
Ellie Ellicott is CCLG’s Research Communication Executive.
She is using her lifelong fascination with science to share the world of childhood cancer research with CCLG’s fantastic supporters.
You can find Ellie on Twitter: @EllieW_CCLG