Each year in the UK, an average of around 500 children aged 14 and under are diagnosed with a brain tumour. Tragically, brain tumours are the biggest cancer killer of children and young adults in the UK and 60% of children who do survive a brain tumour don’t achieve complete independence as adults.
We’re determined to change this by funding pioneering research into kinder, more effective treatments for children with brain tumours. In addition to this, we provide specialist support services for families affected by a brain tumour diagnosis and campaign to create meaningful change that helps them thrive.
Thankfully, we’re not alone in this. As well as the incredible support provided by you – the brain tumour community – we’re joined by our Family Led Charity partners.
What is a Family Led Charity partner?
Our Family Led Charity partners are usually smaller charities created by people diagnosed with a brain tumour or their families. Often, they’re set up in the memory of somebody who sadly died following a brain tumour diagnosis.
Each of our Family Led Charity partners has their own individual values and goals. But they all share our desire to help everybody affected by a brain tumour live a longer, better life.
We work with them to find projects they’re passionate about so they can ensure the funds they raise – as well as the time they generously give to The Charity – have the biggest impact.
If you’re a charity that’s interested in partnering with us to help fund pioneering research, provide life-changing support services and change-making campaigns, please contact our Gifts and Partnership Manager – Phoebe Day. You can email Phoebe using phoebe.day@thebraintumourcharity.org or call her on 01252 749990.
Shining a light on our paediatric Family Led Charity partners!
September is Childhood Cancer Awareness Month, so we’re shining a light on our pioneering paediatric Family Led Charity partners.
We’d like to honour and thank Tom, Oscar, William, Joss, Shay, Eva, Albie, Will, Billie, Larsen and Evie. Thank you also to their parents, friends and family who continue to work tirelessly to campaign, fund research and provide support to the brain tumour community. We’re so proud to stand alongside you.
The Billie Butterfly Fund was set up by Billie’s family after she was diagnosed with an inoperable brain stem tumour when she was four. Sadly, Billie died less than a year after her diagnosis.
The Billie Butterfly Fund have gone on to generously support The Charity with over £300,000 towards our paediatric research. This has recently led to a breakthrough that could potentially lead to a new treatment for a type of rare paediatric brain tumour.
Eva’s Angels is a charity dedicated to Eva who died in 2017 following a battle with Diffuse Intrinsic Pontine Glioma (DIPG) a rare childhood brainstem tumour.
They provide short breaks on the Kent coast for families who are affected by childhood cancer and plan to help fund research into DIPGs.
When she was 13, Evie was diagnosed with an aggressive brain tumour and sadly died just twelve weeks later.
Evie’s Gift was set up to help parents whose children are in hospital with a life-threatening or life-limiting condition by providing financial assistance for food, travel and hotel costs. They’ve also supported The Charity with over £20,000 towards our pioneering partnership with the Structural Genomics Consortium (SGC).
In 2011, Joss Parkes died in 2011 from a diffuse midline glioma when he was just 10. His parents Dianne and Nigel set up Joss Searchlight in his memory to fund research into cures for childhood brain tumours, raise awareness and provide support for families affected by brain cancer. We were recently fortunate to receive a three-year grant totaling £150,000 in Joss’ name.
Larsen’s Pride was set up in memory of Larsen Roberts, who died in 2019 when he was just five following a brain tumour diagnosis.
They help bring comfort to children diagnosed with a brain tumour through donations of Larsen’s favourite Jellycat ‘big cat’ toys. Larsen’s Pride also collaborates with healthcare professionals and other charities to support projects and develop resources which will improve the lives of children during their brain tumour treatment.
After being diagnosed with a particularly aggressive form of medulloblastoma, Will’s family tragically lost him just nine months later in February 2019.
Little Hero helps other families suffering from the devastating effects of brain tumours and raises money for research into more effective primary treatments for the most aggressive paediatric brain tumours. They recently supported us with a generous £30,000 gift to help fund our research project led by Dr Laure Bihannic.
OSCAR’s Paediatric Brain Tumour Charity was formed in the summer of 2014 by the parents and friends of Oscar Hughes. Oscar was just nine when he died of a medulloblastoma in May 2014.
Dedicated to finding kinder, more effective cures for medulloblastoma, we’ve partnered with OSCAR’S to fund research into new drug development and an ongoing clinical trial. They’ve also supported our Better Safe Than Tumour campaign to promote greater awareness of the common brain tumour signs and symptoms in children.
In the face of losing their eldest son, Shay, less than two years after being diagnosed with a glioblastoma, Niki and Deenu set up Shay’s Smiles.
Shay’s Smiles support families of children diagnosed with a glioblastoma, as well as funding vital research – including a generous five-year grant of £250,000 to The Charity in Shay’s name.
Tom’s Trust was established by Tom’s parents in 2011 after he sadly died following a short seven-month battle with a brain tumour when he was just nine.
They’re the UK’s only charity dedicated to providing mental health support to children and young people with brain other central nervous system tumours, and their families.
The Albie Sugden Foundation supports children struggling through the effects of treatment and is helping accelerate new cures for this brutal disease.
It was established in 2023 after the death of Albie Sugden when he was just two following his diagnosis of an incredibly rare, aggressive brain tumour called AT/RT (atypical teratoid rhabdoid tumour).
Through our partnership, they recently committed £100,000 over five years towards research into paediatric high grade brain tumours.
The William Low Trust was set up in memory of William Low. They help raise funds for research into brain tumours and support services for young people affected by a brain tumour and their families.
If you’re a charity that’s interested in partnering with us to help fund pioneering research, provide life-changing support services and change-making campaigns, please contact our Gifts and Partnership Manager – Phoebe Day. You can email Phoebe using phoebe.day@thebraintumourcharity.org or call her on 01252 749990.