When your child is diagnosed with cancer, life as you knew it changes in an instant. The ground shifts beneath you, and nothing feels certain anymore. For many parents, there’s no going back to ‘normal’. Some face the unimaginable loss of their child. Others live with the lasting impact of harsh treatments and uncertainty. And for many, the experience leaves them forever changed, their eyes newly opened to the harsh reality of childhood cancer. In the face of all this, some choose to channel their pain into purpose to make a difference.
There are several ways to achieve this, but one of the most effective is by funding childhood cancer research. However, it isn’t easy to suddenly start funding childhood cancer research – it’s expensive and takes a lot of work. In a scientific world filled with acronyms and jargon, it is easy to get overwhelmed trying to choose the best project.
CCLG’s Special Named Funds are the ideal way for families to raise money for research. They operate like mini-charities, with CCLG taking on the burden of admin and legal so that families can focus on the important bit - raising money for research. The family can choose where all the money raised goes, for example, such as into a specific cancer type.
When there’s enough funds in the pot, CCLG will put out a national call to researchers asking them to apply for funding for research into that cancer. We can also combine the funds from several relevant Special Named Funds to get the best impact out of every penny raised. Our expert Research Advisory Group reviews all the applications to pick the very best projects, and our Patient and Public Interest group provides feedback from the view of the family experience. Together, this ensures that any research funded is of the highest quality.
Since the Special Named Fund programme was launched in 2014, 137 families have set up funds – of which over 100 are still active. Together, these families have raised over £4.5 million and funded 38 vital research projects. But what’s it like to run a Special Named Fund and fund research? We spoke to three parents about their experiences…
Kayla’s Rainbow Appeal
In 2017, Kayla was diagnosed with Philadelphia-positive acute lymphoblastic leukaemia (Ph+ALL). She was just five years old, and her mum Siana saw her change “from a happy, energetic, innocent hurricane to a sad, frail, very poorly baby bird".
Kayla during treatment.
During treatment, Siana learnt about CCLG, and used our information and storybooks to understand and explain what was happening. Thankfully, after two years of gruelling chemotherapy and learning to walk again, Kayla’s cancer was gone. Siana said that Kayla’s experience inspired her to set up Kayla’s Rainbow Appeal in 2019:
“We saw first-hand how brutal treatment is. During Kayla's treatment, she spent time in PICU and spent hundreds of nights in hospital. The treatment has caused lasting neurological damage as well as other late effects. This has to change - we need to find kinder, safer treatments for our children.”
Kayla’s fund raises money for research into Ph+ALL, and has funded a research project titled ‘Identifying a new blood cancer to improve the outlook for patients with acute lymphoblastic leukaemia’. Siana said:
Funding research into Ph+ALL is my biggest achievement. We recently received an update that progress is being made with the research we funded! It could mean that children who are now diagnosed with Ph+ALL will hopefully receive the correct treatment faster.
“The thought of helping even one child to receive kinder, more effective treatment is enough to motivate me. But CCLG also keeps us motivated - they provide us with so much support with every aspect of running our fund, and of course facilitating the research.”
Despite Siana having a goal of only around £500 when she set up the fund, Kayla’s Rainbow Appeal has now raised over £20,000. Siana said that her family are “over the moon”, adding:
“Kayla is endlessly proud of what her fund has achieved. Her face lights up at every event and she loves reading the messages of support with every donation! I cannot begin to explain how much our community supported us through Kayla's treatment and how they continue to support us with fundraising.”
Kayla now, with her dog Buzz.
Be More Ruby
Ruby’s parents, Claire and Andy, set up her Special Named Fund, originally called Super Ruby’s Rhabdo Raiser, after her rhabdomyosarcoma came back in 2019. Claire said:
“We set up a Special Named Fund when Ruby relapsed. At this point, we knew that the treatment options were very limited and that Ruby wanted to help other children like her. So, we decided to try and do something to make a difference, and a research fund was the obvious choice.”
Claire and Ruby.
Treatment to help manage the cancer was only able to prolong Ruby’s life until the very start of 2020, and she passed away peacefully on 3rd January 2020 aged six. In her honour, Ruby’s parents renamed the fund to Be More Ruby to embody Ruby’s “infectious, positive spirit.”
Now, Ruby’s fund has supported six research projects, all aiming to improve survival for patients with rhabdomyosarcoma – from finding new treatments to understanding why the cancer is sometimes harder to treat.
Claire said: “It’s very rewarding, especially when you hear or see feedback about how a project has helped someone. We hope there are real, tangible benefits for patients like Ruby and their families. Anything that makes treatment better, or the journey a little easier, is an achievement and means Ruby has succeeded in her ambition.”
Despite the challenges of running a fund, like maintaining momentum and coming up with the new fundraising ideas needed to engage supporters, Claire would recommend Special Named Funds to other parents:
We can’t imagine life without Ruby’s fund as a focus in the years since she was taken by rhabdomyosarcoma. It’s been the best thing we could’ve done. It’s an important lasting legacy for our girl, who continues to inspire not just us, but many others too.
Marcus’ Mission
Marcus was 10 years old when he was diagnosed with acute myeloid leukaemia (AML) in 2024. He started treatment straight away, but it sadly didn’t work. A clinical trial gave him a little more time, but ultimately, even the latest research was not able to save him.
Marcus during treatment.
Laura, Marcus’ mum, said: “When we set up Marcus’ Mission during Marcus’ treatment, I never imagined it would become a legacy fund just a few months later. Early on, we were told that the existing treatments had failed and that there were no typical options left for him. It felt impossible to believe, with all the science and advances in medicine, that there was nothing else anyone could do.
“As a parent, you cling to every bit of hope. We were fortunate to see the power of research first-hand when Marcus was later accepted onto a clinical trial, but it couldn’t cure his AML. We lost him in October 2024 after a rapid eight-month battle.”
Marcus and Laura.
Marcus was a big part of setting up the fund, and even helped design the logo - he wanted to make a difference so that “children don’t have to have injections anymore.” By fundraising for research, Laura hopes to not only honour Marcus’ selflessness and bravery, but also to transform how AML is treated in children.
Laura explained:
Ultimately, I want AML to become a completely treatable disease. One with higher survival rates, better outcomes, and more hope for families like ours.
Some bereaved parents find comfort in taking action and in having a way to talk about and honour their child. Laura said:
“Grief is a journey, and Marcus’ Mission has now become a part of mine - it is a way to carry Marcus forward with me. It is bittersweet, but it gives me purpose and connection. Knowing that others are remembering Marcus and supporting the mission in his name is deeply touching.
“Now that he’s gone, I’m so grateful he was part of the fund’s beginning. It means Marcus’ Mission truly reflects him, his humour, his style, and his kindness, and we are carrying it forward in this way.”
Marcus and his beloved dog Rosie.
You can find out more about CCLG’s Special Named Fund programme, including how to support a fund or set up a new fund, on our website. Or, find out more about the three funds featured below.
Be More Ruby
Be More Ruby
Be More Ruby is a Special Named Fund at CCLG raising money for research into rhabdomyosarcoma. Visit the fund here.
Kayla's Rainbow Appeal
Kayla's Rainbow Appeal
Kayla's Rainbow Appeal is a Special Named Fund at CCLG raising money for research into Philadelphia-positive acute lymphoblastic leukaemia (PH+ALL). Visit the fund here.
Marcus' Mission
Marcus' Mission
Marcus' Mission is a Special Named Fund at CCLG raising money for research into acute myeloid leukaemia (AML), in memory of Marcus. Visit the fund here.
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 X: @EllieW_CCLG
