Step by step - 20 years of saving and improving children's lives
In 1997, hundreds of people gave to our Golden Jubilee Appeal, coming together with the families of children battling brain tumours to help found our Children’s Brain Tumour Research Centre (CBTRC).
20 years later, we are celebrating the tremendous leaps in diagnosis and treatment made by our researchers thanks to your belief and backing. Your continued generosity across the years has helped save the lives of hundreds of children with brain tumours like Amy Redman, and progress vital research into this complex childhood cancer. This is Amy’s story, told by her mum Jane.
"Anyone who has climbed a mountain knows how it feels to look down at the miniature world below and see the scars of the footpaths you have scaled. You get the same feeling back at ground level, looking up at the peak you conquered. It seems impossible you were up there,” recounts Jane.
“It will be 18 years this May since my daughter was left mute and paralysed by a brain tumour and I have the same unreal sense of perspective. Looking at her now – walking, talking, working, laughing – it takes a leap of imagination to put myself back in the skin of the devastated parent whose life had been turned to rubble by cancer.”
Amy is one of over 550 children with brain cancer treated at the CBTRC since it opened its doors 20 years ago. Amy’s treatment and rehabilitation was overseen by Professor David Walker – a respected paediatric oncologist and one of the co-directors of the centre. “Amy went into an operating theatre for surgery to remove a brain tumour and within days was a mute, incontinent wreck. The bewildering thing was that the operation had gone remarkably well,but two days later she developed a condition called posterior fossa syndrome, a result of catastrophic swelling of the brain. It affects a quarter of children who have this surgery and leaves them with lifelong disabilities,” said Jane.
“Then came the years of rehabilitation: the minuscule signs of voluntary movement returning to Amy’s short-circuited body; the physiotherapy; speech therapy; special needs support; the battles with authorities. The journey has been uphill every step of the way.”
“Amy is now a young woman of 26 and we are immensely proud of her. Her balance is poor and her speech still harbours traces of that cerebellar drawl, but she can walk without aid and join in any conversation. She got her A levels and has a job in a busy kitchen. Her working memory is unreliable, but she has the long-term memory of an elephant. And with her highbrow literary tastes, you don’t patronise Amy at Scrabble. For now, it’s easier for her to live at home with us, but independence is possible for Amy when and if she wants it."
20 years helping children like Amy to enjoy a brighter future
For the past two decades, visionary clinicians and researchers, along with generous donors, volunteers and fundraisers, have all helped to make the CBTRC into the world-leading research centre it is today. Our dedicated teams take a multi-faceted approach – they work with specialists from a wide range of departments to identify and treat patients in new ways that reduce the risks of brain injury, and tackle tumour types which are currently resistant to treatments.
Today, 7 out of 10 children survive a brain tumour – more than ever before. The average time taken to diagnose a child in the UK has halved thanks to national campaigns like HeadSmart. Our research into treatment techniques, alongside the biology and behaviour of childhood brain tumours, has been shared with researchers and clinicians worldwide.
Yet brain tumours remain the biggest cancer killer of children
Children’s brains are particularly vulnerable to the potential side effects of treatments because they are still developing. Despite significant progress, two-thirds of all children who do survive are left with disabilities – life-long damage caused by both the tumour itself and the intensive treatments required to save their young lives.In July 2016, it was confirmed that national funding for brain tumour research had fallen, with this complex disease receiving less than 1% of the UK’s cancer research budget.
“Before her operation, the neurosurgeon explained that removing a brain tumour was like trying to extract the yolk from a raw egg without disturbing the white. In an instant we saw it: the thin membrane of the yolk rupturing, the egg white torn and tattered, streaked with yellow. When I hear that two thirds of children with brain tumours survive, I always think about that egg yolk. It’s not enough to cure the cancer if it leaves the child with major disabilities," said Jane.
“Looking back at the mountaintop of remission, I now see we had two enemies. One was cancer, its malignant cells waiting to slay us. The other was brain damage, the cataclysmic landslide that buried the child we knew.”
“Last September I ran the Robin Hood half marathon to help raise funds for the CBTRC. My hope is that research will lead to a day when children don’t have two battles on their hands, one against cancer and the other against brain damage. That’s why we have to keep working together and supporting each other – so future generations only have one battle to fight.”
20 years in the making - milestones and the impact of research
1997
The CBTRC opens in Nottingham as part of the University’s Golden Jubilee Campaign
2001
The CBTRC lobbied to create the All Party Parliamentary Group (APPG) on Brain Tumours in Parliament
2002
The Brain Pathways project wins funding in collaboration with the Samatha Dickson Brain Tumour Trust
2004
The CBTRC leads on international trail in Low Grade Gilomas of Childhood, the most common type of brain tumours in children
2005
Professor Richard Grundy joins the team - the first Chair in Neuro-Oncology in Europe
2011
The national awareness campaign, HeadSmart launches to the public
2013
Dr Ruman Rahman and Dr Stuart Smith are appointed and initiate complementary research in adult brain tumours
2014
Thanks to the amazing fundraising efforts of supporters, Life Cycle 4 raises a phenomenal £750,000 for the centre
2015
Through HeadSmart, the average time taken to diagnose a child in the UK has fallen from 14 weeks to 6.7 weeks
2015
The CBTRC led the major British Neuro-Oncology Society annual conference in Nottingham
2016
120,129 people signed a petition on brain tumour research funding, for which the CBTRC provided evidence
2016
The CBTRC took on a major role in a Cancer Research UK-funded clinical trail into ependymoma
2017
The CBTRC leads the first international consortium on paediatric drug delivery to be launched in Brussels and New York
Your support has been a lifeline for the CBTRC
With 10 children in the UK diagnosed with the disease each week, more research is desperately needed. This is why we are making the CBTRC the focus for Nottingham Life Cycle 7, our annual fundraising campaign.
With your help, we can find tumours earlier
As a tumour grows, it inflicts progressive injury within the brain. By diagnosing a tumour early, we can help reduce this damage. Our researchers are working to strengthen national diagnosis guidelines, making it easier for more people to take action fast to help save a child’s life.
You can help us unlock the complexities of brain tumours
Not all brain tumours are the same. The different types can affect children in a range of ways. We are working to find the best ways of treating the different tumour types. This includes investigating the molecular biology of cancer cells and the role of genetics; alongside developing high-resolution imaging techniques.
We can make existing treatments safer and more effective
Amy developed a complication after surgery called posterior fossa syndrome. Our researchers are working with global partners on a pre-operative assessment tool to help clinicians predict a child’s risk of developing this condition. This will help doctors around the world to make better judgements about whether or not to use surgery as part of each child’s treatment plan.
Another challenge is working out how to bypass our body’s protective blood-brain-barrier to target the tumour directly. This year, the CBTRC will launch the world’s first research consortium dedicated to drug delivery for children’s brain tumours. By finding innovative ways to get drugs directly into the tumour, we can use lower doses – helping protect the healthy brain and body.
Together, we can give children with brain tumours a brighter future.
Support this life-changing research
You can help us raise £500,000 for children's brain tumour research as part of Life Cycle 7. This year, there are lots of new ways to take part:
Get adventurous
Trek the Great Wall of China, climb Mount Kilimanjaro, cycle London to Paris or join our world-record skydiving attempt.
Get creative
From cake sales and cocktail nights to cèilidhs or even pulling a plane –have fun and fundraise with friends and family.
Make a donation
Visit Life Cycle 7 to help us reach our £500,000 target
Run a marathon
Take part in the Robin Hood half or full marathon this September, or choose a race that's right for you.
Join our superhero walk
Get all the family together, grab your capes and join us at University Park on Sunday 1 October for our sponsored, fancy-dress walk.