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Parent-led charities and their inspirational support for the ICR’s child cancer research

How families are making a hugely valuable contribution towards our research to improve the outlook for children with cancer.

From left to right: Scientists Sally George and Elisa Izquierdo Delgado, who received funding from Christopher’s Smile, with Karen Capel, Kevin Capel

From left to right: Scientists Sally George and Elisa Izquierdo Delgado, who received funding from Christopher’s Smile, with Karen Capel, Kevin Capel. 

Losing a child to cancer is one of the most traumatic experiences a parent can go through.

People respond in different ways to the enormous sense of loss that it causes. In a few cases, parents have channelled their emotions into the establishment of trusts and small charities aiming to fund research that improves the lives of future patients.

Here at The Institute of Cancer Research, London, we’re fortunate to receive considerable financial support from these parent-led charities. We feel a sense of duty to repay the money we receive by delivering tangible benefits in our understanding and treatment of children’s cancers.

Although cancers in children and young people are much less common than in adults, cancer is nonetheless the biggest cause of death in this age group.

While some childhood cancers, such as leukaemia, can usually be treated successfully, others, such as paediatric brain cancers, continue to have poor survival rates.

And treatments for childhood and teenage cancers also tend to be much less sophisticated than those for adult cancers. While adults are increasingly treated with precision medicines targeted to the weaknesses of their tumours, children still often get traditional one-size-fits- all chemotherapy, which can cause serious, and long-lasting, side-effects.

The main problem is that we simply don’t know enough about the biology of childhood cancers – and this is where parent-led charities are playing such an important role.

At the ICR, they are funding research that is delving into the genetic background of children’s cancers, identifying mutations linked to the risk of aggressive disease or recurrence, and developing tests that can help predict prognosis or pick out mutations that could be targeted by drugs. It is thanks to vital research like this that we are able to make clinical breakthroughs much more quickly.

Inspirational charities and tangible results

Parents of children who have had cancer support us in all sorts of ways: from setting up online donation pages in memoriam, to bigger projects such as an annual fundraising event celebrating their late child’s birthday in tribute.

From these early enterprises, some people then go on to set up a whole new charity in their child’s name, to fundraise for research into a particular form of cancer as well as to increase public awareness of it. Such people show incredible fortitude, dedication, courage and altruism in the wake of their personal tragedy, as they try to help others avoid such tragedies through their efforts to fund important research – and they contribute significantly.

The relentless efforts of our scientists and the families behind us have the same motivation: to improve the outlook for children with cancer, both now and in the future.

Charities such as Abbie’s Army, Christopher’s Smile, Abbie’s Fund, Rob’s ARTTT (A Rare Teenage Tumour Trust), the Chris Lucas Trust and the Tom Bowdidge Foundation have been incredible in their support of a range of different research projects at the ICR, which are making a hugely positive difference to the treatment options for children with cancer. These charities, in turn, are gaining the satisfaction of seeing tangible results emerge from their investment.

Abbie’s Army has helped move forward our research into childhood brain cancers. The charity was set up in memory of six-year old Abbie Mifsud, who developed diffuse intrinsic pontine glioma (DIPG), a type of brain tumour usually diagnosed in children aged between five and nine years, and which is inoperable and incurable.

The charity’s contributions enabled the talented researcher Katy Taylor to complete her PhD, which was focused on identifying and testing novel therapeutic targets for DIPG. She was guided by a team headed by Professor Chris Jones, who said: “We are lucky enough to receive support from several parent-led foundations. The fact that there is such an unmet clinical need in this area, and that any progress we can make would allow families to avoid such a tragedy, hugely motivates my team, of which I am very proud to be part.”

Amanda Walker, Abbie’s mother, said: “We are very proud to be supporting the ICR. It is so important for us to know that the funding we raise in Abbie’s memory is going to make a difference for children and families diagnosed with DIPG in the future.”

Amanda and Ray in the lab

Abbie’s parents, Amanda and Ray, visiting the ICR lab.

Katy Taylor herself found that the emotional investment in the outcomes of her research lent it an even greater focus and made it especially rewarding – to the extent that she dedicated her PhD thesis to Abbie’s memory.

Her dedication to her subject was rewarded in other ways, too: she was the recipient of the Paediatric Basic Science Award at the Annual Society of Neuro-Oncology Scientific Meeting in the US – a leading international conference of brain tumour experts from around the world. The competition was extremely tough, with almost 1,000 entries, so this is a brilliant achievement for Katy, as well as being a source of pride for the ICR and the founders of Abbie’s Army.

'A huge amount of research'

Christopher’s Smile was set up by Kevin and Karen Capel in memory of their son, who developed medulloblastoma, a type of brain tumour which is most commonly found in children. After a brave fight, Christopher Capel was just five years’ old when he died from the disease.

The charity’s input has made possible a huge amount of research into childhood-specific cancers. It has supported the funding of four full-time research scientists, and they contributed significantly to the development of a new genetic test for children with cancer, which will enable clinicians to analyse 81 cancer genes in children’s tumours and understand the specific mutations driving them. This should eventually enable oncologists to design the best possible treatment plan for each patient, including where appropriate access to the latest clinical trials.

Kevin Capel commented: “This new test is a first, and will open doors to potential new treatments, benefiting those children who receive the worst prognosis.”

The Chris Lucas Trust has for some years helped propel our research into another type of tumour: soft-tissue sarcoma. It was set up in 2000 by the parents of a teenager who developed rhabdomyosarcoma, which is the most common of this kind to be found in children and young people, and is a major cause of cancer-related deaths as it is both hard to detect (it resembles muscle tissue) and hard to treat.

So far, the Lucas family’s contributions have enabled our researchers to learn about the disease and to find targeted therapies to treat it successfully. Our studies have resulted in the creation of two separate molecular therapies that could block the processes driving growth in this tumour.

The progress has been gratifying for Chris’s parents. Lynn Lucas commented: “We recognised the ICR’s expertise in childhood cancer when we first sought advice about funding research, and we believed in their commitment to developing new drugs that will help children and people with cancer.”

Thanks are also due to the Tom Bowdidge Foundation, set up by a teenage cancer patient himself, which has helped us conduct research into another type of soft-tissue sarcoma: desmoplastic small round cell tumour (DSRCT).

This rarer form of the cancer tends to occur only in young men in their late teens or early twenties, and is particularly aggressive. When Tom died aged just 19, his parents took up his mission to fund research into the disease, for which no real targeted treatments have been available up until now.

The foundation’s contributions have so far funded a postdoctoral researcher over three years, as well as other DSRCT research costs. The team the foundation supports is guided by Professor Janet Shipley – one of the world’s leading experts on soft-tissue sarcomas. She is trying to gain insights into the DSRCT by unravelling what triggers it and understanding its biology. The idea is that this should ultimately help them find targeted treatments to fight the disease.

Richard Bowdidge, Tom’s father, commented: “One of the key aims of the Foundation is to make a real difference to the way teenage cancers are treated in the future. To be able to work with the ICR is a really exciting opportunity for us and funding research into DSRCT is especially important: it is what Tom would have wanted.

Finding a voice with our charity partners

We have also worked closely with parent-led charities on our important campaigning work.

Pharmaceutical companies have tended to be reluctant to run the trials of new therapies that could potentially help children and adolescents with cancer because there is little money to be made in producing treatments for children.

The EU legislation governing paediatric research does attempt to ensure companies more often trial new drugs in children, but a waiver system continues to allow many to opt out from doing so.

So, in the last couple of years, the ICR has taken steps to try and change this, and campaigned to alter the EU Paediatric Regulation to make it harder to opt out from running trials. Our Chief Executive Professor Paul Workman has written a blog about it.

ICR staff, including Professor Louis Chesler and the now-retired Professor Andy Pearson, campaigned with others in the paediatric oncology community to stop companies from being able to gain a waiver from running paediatric trials, wherever there is evidence that an adult cancer drug could potentially benefit children.

We gained widespread media coverage for the cause, and a letter signed by Professor Workman and many of our partners – including Abbie’s Army, the Chris Lucas Trust and Christopher’s Smile – was published in the Daily Telegraph.

Eventually the European Medicines Agency agreed to alter its guidelines for the regulation of paediatric trials of new drugs, to make it harder for pharmaceutical companies to sidestep undertaking them.

There is some way to go before we can feel assured that all worthwhile paediatric trials are carried out, but this is a step in the right direction, and it should mean that more children with cancer will have the access they deserve to the targeted therapies that could help them.

It is another example of how the ICR is able to maximise its impact on the lives of children with cancer by working together with partners – and in particular with parent-led charities.

If you have been inspired by what you’ve read here and would like more information about the childhood cancer research we undertake, or if you would like to fundraise in memory of a loved one, please contact Nicola Shaw on 020 8722 4227; at [email protected]; or via Twitter: @NicolaShaw_ICR.


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