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AT the LAb

Our Research & Funding

Our fundraising needs to help advance the research into rhabdomyosarcoma. It s crucial to find further effective treatments to help improve the quality of life of children and young adults. To help influence pharmaceutical companies to introduce more effective treatments relapsed patients. Ultimately to find a  cure for rhabdomyosarcoma. 

Our Advancement

Chris Lucas Trust in partnership with the  Institute of Cancer Research (ICR), London, we are on the brink of making some major breakthroughs for children, teenagers and young adults with cancer – advances that can offer more young patients the chance of cure, and a better long-term quality of life. These breakthroughs are being made possible with the support of Chris Lucas Trust.

Around three-quarters of children with cancer are cured of their disease, but that proportion has hardly grown in recent years, and survivors can experience life-long side-effects from harsh chemotherapy and radiotherapy. It has taken too long for young people to benefit from the kinds of targeted cancer treatment that have so improved outcomes for many adults with cancer – but thanks to the ICR and organisations like us, that is now changing.

Our Research Priorities

Chris Lucas Trust  fundraising for over 23 years our vital research into Rhabdomyosarcoma

  • A recent study, aided by the support of Chris Lucas Trust, reported that a simple blood test could help guide the treatment of children with the cancer rhabdomyosarcoma. Less than a third of these children who relapse or whose cancer has spread will survive. Researchers found that ‘liquid biopsy’ blood tests could pick up signs that a cancer had returned, assess the severity of the disease, and help guide choice of drugs. with the ICR  the causes of rhabdomyosarcoma, building upon 20 years of researching those cells that create tumours


  • In partnership with the ICR Identifying new developments and successful targets always in the forefront of innovative new treatments and new drugs for children with relapsed or metastatic disease where a cure is extremely limited.

  • Chris Lucas Trust with the ICR “Our early pilot findings suggest that liquid biopsies can detect early signs of relapse, assess the severity of disease and help guide choice of drug treatment. We’re excited to be taking these findings into an international clinical trial involving larger numbers of children, and we hope we can realise the potential of using liquid biopsies to make children’s cancer treatment smarter and kinder.” – Professor Janet Shipley

  • Endeavouring to take into account less evasive  treatments that should enhance the quality of life of children and young adults.

  • Disseminate all Finding within the NHS and World-Wide 

Scientific Advisory Body

Chris Lucas Trust  has families that regularly contact them about their childs relapses.

We discuss the matter of relapses with  Scientific Advisory Body that includes all ICR professionals,  scientists, clinicians of rhabdomyosarcoma. to enable to help the child receive wherever possible further treatment.  The body is always available to help us with our urgent questions and any solutions by their expert guidance primarily on the following:

  • Always identifying, positioning  and evaluating our research priorities

  • Always discussions about any funding projects.

  • Annual Reports

Current Research Projects

Chris Lucas Trust has donated more than £2.5 million to Institute of Cancer Research UK (ICR)

Fundraising to find a cure for  Rhabdomyosarcoma for over 22 years to find better treatment for children and young adults.

Chris Lucas funds £60,000 the only European biopsy samples from all children suffering from Rhadomyosarcoma thoughout Europe.

ICR - Lynn Lucas, joint founder of The Chris Lucas Trust, has worked tirelessly with her husband Lynn to support our research into rhabdomyosarcoma, a rare childhood cancer which took their son Chris in 2000.

The Chris Lucas Trust has raised over £1 million for research into rhabdomyosarcoma at the ICR, and continue to fundraise through flagship events such as the Great North Bike Ride.

Their support has helped Professor Janet Shipley's lab develop a genetic test to better classify rhabdomyosarcoma patients into low and high risk groups that decide treatment intensity.

In 2017 Lynn received the NHS Hero Award for Fundraiser of the Year for her continued support for the ICR. She was also recognised by Prime Minister Theresa May when she was chosen for a Points of Light Award.

Lara Jukes, Director of Development at the ICR, said: "Tim, Lynn and their supporters are passionate and dedicated fundraisers for the ICR's cancer research, and it was an honour to celebrate their fantastic contributions to our work at our Discovery Club event.

"Finding new ways to tackle hard to treat cancers is a particular goal of ours, but it's a team effort, and without their help it would be so much harder. You are an inspiration to our researchers and through your support we will make the discoveries that defeat cancer."

Chris Lucas Trust donates £300,000 to rhabdomyosarcoma research, made another generous pledge of £300,000 to support rhabdomyosarcoma research at The Institute, the disease in July 2000, has so far raised over £1m for research into rhabdomyosarcoma and continues, in rhabdomyosarcoma, a major cause of cancer death in children. This latest award from the Chris Lucas Trust will enable us to employ two scientists to exclusively work on rhabdomyosarcoma for the next three years, on research into soft tissue sarcomas. Rhabdomyosarcoma is a tumour that resembles muscle tissue

Lynn Lucas recognised by Prime Minister with Points of Light Award after raising millions for ICR research


Devoted mum Lynn Lucas has raised more than £2 million to fund research into the rare cancer which killed her teenage son.

Study Funded by Chris Lucas Trust
Test for single genetic fault can predict child cancer patient survival

A study led by The Institute of Cancer Research (ICR) has shown that a simple genetic test could help predict the aggressiveness of rhabdomyosarcomas in children and should be introduced into clinical practice. The test would lead to changes in treatment for many patients, allowing some children to escape potentially long-term side-effects whilst giving others the intense treatments they need to increase their chances of survival.


In a paper published online today in the Journal of Clinical Oncology, Dr Janet Shipley and collaborators in the UK, Switzerland and France found that children who have a tumour called rhabdomyosarcoma with a particular genetic fault, known as the PAX3/FOXO1 fusion gene, have significantly poorer survival rates than other rhabdomyosarcoma patients.


Children diagnosed with rhabdomyosarcoma are treated with a combination of chemotherapy and surgery and sometimes radiotherapy. These treatments have helped improve survival rates, but can cause serious and long-term side-effects including the potential to develop another cancer later in life. Having better information about how aggressively the tumour is likely to behave can help doctors to tailor treatment for each patient that balances the need for effective treatment with the side-effects of such treatment.


Dr Shipley says: “Our previous studies have raised issues with the current system of predicting patients’ risk, which is based on the appearance of patients’ tumours. Our new study finds that a simple genetic test should be incorporated into standard clinical practice as it significantly improves our ability to predict tumour aggressiveness. This fusion gene test could be used alongside other standard clinical measures to divide patients into one of four risk-groups, so that treatment can be tailored accordingly. Importantly, this will mean some patients who were previously categorised as high-risk could be able to avoid the side-effects associated with intense treatment, while others should receive the intense treatment they need to increase their chance of survival.”


Using the new system, 31 per cent of patients in the study who would previously have been classified as intermediate risk would be reassigned to a lower risk group, while a further 29 per cent of intermediate-risk patients would be moved to a higher risk group.


In this study, which was funded by the Chris Lucas TrustCancer Research UK and La Ligue Nationale Contre le Cancer, Dr Shipley’s team analysed data for thousands of genes from 225 rhabdomyosarcoma samples. This identified a panel of 15 gene alterations that could be used to predict how patients responded to treatment. However, these gene changes were mostly linked to the presence of the PAX3/FOXO1 fusion gene, which is much simpler and cheaper to test for than the other alterations. The test would involve scanning for the presence of the fusion gene in a sample of the patient’s tumour.


Combining the fusion gene test with two existing standard measures of risk for rhabdomyosarcomas – the patient’s age at diagnosis and the tumour’s stage of development – gave a simple but highly effective prognostic test.


Lynn Lucas, whose son passed away in July 2000 after a three year battle with rhabdomyosarcoma, says the Chris Lucas Trust helped fund the team’s important research in the hope that other children and parents would be spared their ordeal.

Treatments for the cancer left Chris with serious side-effects including weight loss, difficulty walking and a painful mouth.

“Rhabdomyosarcoma is a cruel disease since children can go into remission thinking they have won the battle then find out months later it has returned even more aggressive,” she says. “The current treatments have some dreadful side-effects, which children have no choice at present but to tolerate. This test could help some children avoid this suffering, making sure only those who really need it receive intense treatment.”


Kate Law, director of clinical research at Cancer Research UK, said: “Over the last 30 years we’ve made great progress in helping more children survive cancer, since the 1970s the survival rate for rhabdomyosarcoma has more than doubled. But, some of the treatments that are behind this success have side effects and it’s important we find ways to minimise the number of children who are exposed to them.”


The study was a collaboration between the ICR, The Royal Marsden NHS Foundation Trust, the Northern Institute for Cancer Research and University College London Institute of Child Health in the UK; SIB Swiss Institute of Bioinformatics and the Centre Hospitalier Universitaire Vaudois in Switzerland, and the Institut CurieLigue Nationale Contre le Cancer and Institut Gustave Roussy in France.


Media Contact: ICR Science Communications Manager Jane Bunce on 0207 153 5106 or after hours 077217 47900.

Notes to editors:
PAX3/FOXO1 Fusion Gene Status Is the Key Predictive Molecular Marker in Rhabdomyosarcoma and Significantly Improves Current Risk Stratification publishes today online in the Journal of Clinical Oncology.

Rhabdomyosarcoma is cancer that resembles skeletal muscle and can arise in many different locations in the body.

The fusion gene PAX3/FOX01 is the result of abnormal joining together of the PAX3 gene with the FOXO1 gene. This is thought to arise spontaneously in cells, triggering their development into cancer, and cannot be inherited.

Potential to Reduce Children’s Side-effects from Cancer Treatment

Some children with cancer could be given less intensive treatment than current practice to reduce their risk of damaging side-effects, according to a paper published in the Journal of Clinical Oncology today.


A collaboration between scientists at The Institute of Cancer Research (ICR) and the Institut Curie in Paris has found a genetic test that can identify patients with a less aggressive form of the childhood cancer alveolar rhabdomyosarcoma. Patients with this less aggressive cancer may be receiving toxic treatment they don’t need.


Currently, treatment is based on whether a patient’s cancer is classified as alveolar or embryonal, which is determined by the appearance of a tumour sample under the microscope. Alveolar rhabdomyosarcoma is considered more aggressive, so these patients are given a more intense combination of chemotherapy, radiotherapy and sometimes surgery.


These treatments have helped improve rhabdomyosarcoma survival rates, but also carry risk of serious and long-term side-effects including the potential to develop another cancer later in life.


When the ICR scientists examined samples from 210 rhabdomyosarcoma patients, they identified 39 cancers that looked like aggressive alveolar type but behaved more like the milder embryonal type. This group of patients had less cancer spread and higher survival rates. Genetic testing revealed that the cancers from these patients lacked a genetic abnormality, known as a PAX/FOX01 fusion gene, which has previously been linked to the alveolar subtype.


ICR scientist Dr Janet Shipley says subsequent analysis of thousands of genes confirmed alveolar rhabdomyosarcomas without a fusion gene are biologically similar to the embryonal subtype but very different from alveolar cancers with a fusion gene.


“We have shown that presence of a fusion gene – not tumour appearance – is a key factor in predicting cancer aggressiveness,” Dr Shipley says. “This study should lead to a re-think in the management of children with the fusion gene-negative alveolar cancer in order to minimise side-effects for these patients. There is no longer any evidence to support treating all alveolar cases the same.”


Dr Shipley says the next step is to hold a clinical trial to see if reducing treatment intensity can improve these patients’ quality of life while maintaining survival rates.


Lynn Lucas, whose son passed away in July 2000 after a three year battle with rhabdomyosarcoma, says the treatment left Chris with serious side-effects including weight loss, difficulty walking and a painful mouth.


“We saw first-hand the horrific side-effects of the treatment for this disease. We will be very pleased if this research leads to some children diagnosed with alveolar rhabdomyosarcoma not suffering in the same way,” Mrs Lucas says.


The research was funded by Chris Lucas Trust, Cancer Research UK, La Ligue Nationale Contre le Cancer, Institut National du Cancer and Enfants et Sante Association.



Media Contact: ICR Science Press Officer Jane Bunce or 0207 153 5106 or 077217 47900

Notes to editors:

Rhabdomyosarcoma is cancer that resembles skeletal muscle and can arise in many different locations in the body. The fusion gene PAX/FOX01 is the result of abnormal joining together of a PAX gene with the FOXO1 gene.


The Institute of Cancer Research (ICR)

  • The ICR is Europe’s leading cancer research centre

  • The ICR has been ranked the UK’s top academic research centre, based on the results of the Higher Education Funding Council’s Research Assessment Exercise

  • The ICR works closely with partner The Royal Marsden NHS Foundation Trust to ensure patients immediately benefit from new research. Together the two organisations form the largest comprehensive cancer centre in Europe

  • The ICR has charitable status and relies on voluntary income, spending 95 pence in every pound of total income directly on research

  • As a college of the University of London, the ICR also provides postgraduate higher education of international distinction

  • Over its 100-year history, the ICR’s achievements include identifying the potential link between smoking and lung cancer which was subsequently confirmed, discovering that DNA damage is the basic cause of cancer and isolating more cancer-related genes than any other organisation in the world

For more information visit www.icr.ac.uk


The Chris Lucas Trust
The Chris Lucas Trust is a UK charity which was set up in March 2001 by Lynn and Lynn Lucas following the tragic death of their son Christopher from rhabdomyosarcoma. The Trust raises funds to continue the vital work of a senior post doctoral scientist who focuses exclusively on rhabdomyosarcoma. The research position, which the Trust has funded exclusively since 2005, is based at The Royal Marsden Hospital NHS Foundation Trust and The Institute of Cancer Research. 

For more information visit www.chrislucastrust.co.uk

Our joint letter calling for reform of European regulations on clinical trials in children

This letter was written in support of calls from The Institute of Cancer Research, London and its partner signatories to reform European regulations around trials of cancer treatments in children.

It was published in The Guardian on 14 March 2017.



Children and young people are being denied the latest cancer treatments by outdated European regulations. Pharmaceutical companies are able to use a loophole in EU legislation to avoid trialling cancer drugs in children.

An analysis of European Medicines Agency data by The Institute of Cancer Research, London, shows that since 2012, the loophole has prevented 33 new cancer drugs from being evaluated in children despite evidence that at least some of these treatments could work.

Children's cancers are rare, and there is little financial incentive for companies to develop drugs for them. The current regulation could do much more to ensure children benefit from the dramatic advances seen in adult cancer treatment.

The regulation is badly out of date. It allows pharmaceutical companies to opt out of running paediatric trials simply because the adult cancer a drug targets does not occur in children. But scientists now understand that it is a cancer’s genetic causes – rather than where it happens to grow – which are most important in determining which treatments will work.

Children are missing out on a range of treatments that could effectively target genetic changes within their cancers. Children and young people deserve the same access to new cancer drugs as adults. We believe the European Commission’s on-going consultation is our chance to change the rules to ensure potentially effective cancer drugs have to be trialled in children. If this loophole is not closed now, children could miss out on new cancer treatments for years to come.


Professor Paul Workman, Chief Executive, The Institute of Cancer Research, London

Cally Palmer, Chief Executive, The Royal Marsden NHS Foundation Trust

Siobhan Dunn, Chief Executive, Teenage Cancer Trust

Cliff O’Gorman, Chief Executive, Children with Cancer UK

Professor Bobbie Farsides, Chair of the Nuffield Council on Bioethics Working Group on Children in clinical research: ethical issues

Alastair Kent, Director, Genetic Alliance UK

Amanda Walker and Ray Mifsud, Founders, Abbie’s Army

David and Sara Wakeling, Founders, Alice's Arc

Lynn and Lynn Lucas, Founders, Chris Lucas Trust

Karen and Kevin Capel, Founders, Christopher's Smile

Diego Megia, Founder and President, CRIS Contra el Cancer

Lola Manterola, Founder and President, CRIS Cancer Foundation

Martin and Sian Waite, Founders, Elin Rose Appeal

Mark Proudlove, Founder, Faye's Wish

Dr Jennifer Kelly, General practitioner and founder, The Grace Kelly Ladybird Trust

Samantha Wearne, Founder, The Jack Mylam Foundation

Andrew and Jo Williams, Founders, Lucas' Legacy

Richard and Nikki Bowdidge, Founders, The Tom Bowdidge Foundation

Clinton and Adele Prince, Founders, Tom Prince Cancer Trust

Christopher Copland, Unite2Cure

ICR co-ordinates sector-wide Telegraph letter on childhood cancer drugs rules

A letter written by The Institute of Cancer Research, London, and co-signed by more than 10 charities has been published in The Telegraph. 

The letter calls for a change to EU rules that currently deny children promising cancer drugs. 

It calls for urgent reform to close a regulatory loophole that allows drug companies to be exempted from testing promising drugs in children and young people. 

We had hoped the European Commission would revise its guidelines following a consultation earlier this year on paediatric investigation plans (PIPs). These plans set out how companies will test their drugs in children – and companies legally have to prepare them if seeking authorisation for an adult cancer drug. 

However, companies can be given a waiver from producing a PIP if the drug they are trialling is being tested against cancers that only occur in adults. They can be granted a waiver even if there is evidence the drug could also work in childhood cancers. 

We and several other organisations, including the Teenage Cancer Trust, responded to the European Commission consultation – calling for this loophole to be closed. But the Commission deemed this out of the scope of the consultation. 

The letter responds to this by calling for the relevant European Regulation – called the Paediatric Regulation – to be changed at the earliest possible opportunity to close the loophole. 

It is co-signed by organisations including the Teenage Cancer Trust, Children with Cancer UK and Genetic Alliance UK. 

Commenting on the letter, Professor Paul Workman, Chief Executive of The Institute of Cancer Research, London, said: “Children with cancer are being denied access to new cancer drugs because of a failure of EU regulations to ensure that the latest treatments are tested in clinical trials. The rules need to be revised to provide children with the same access to new cancer drugs that is already afforded to adults. 

“The European Commission has missed a golden opportunity to make changes which could have significantly improved access to new treatments for children with cancer. 

“It is very disappointing that a technicality in EU process should be allowed to block a change that could have transformed access to new cancer drugs for the 15,000 children and adolescents diagnosed with cancer across Europe each year.” 

You can read more about this issue in this blog from our Science Information and Policy Manager, Dr Eva Sharpe. 

The full list of the signatories to the letter is: 

Professor Paul Workman, Chief Executive, The Institute of Cancer Research, London

Siobhan Dunn, CEO, Teenage Cancer Trust

Alistair Kent, Chief Executive, Genetic Alliance UK

Caroline Blakely, Chief Executive, Children with Cancer UK

Sarah Lindsell, CEO, The Brain Tumour Charity

Sue Farrington Smith, Chief Executive, Brain Tumour Research

Lindsey Bennister, Chief Executive, Sarcoma UK

Jane Lyons, CEO, Cancer52

Karen and Kevin Capel, Founders, Christopher’s Smile

Mike Shaw, co-Founder, and Claire Attard, Chairperson, Abbie’s Fund

Amanda Walker, Founder, Abbie’s Army

Lynn Lucas, Founder, Chris Lucas Trust

How our supporters are helping us take on ‘stealth’ cancers

Professor Raj Chopra, Head of Cancer Therapeutics, thanked ICR supporters and spoke about his hopes for the future for cancer treatment – made possible by their support.

He told those gathered at the Discovery Club event, held last month at the Royal Society of Chemistry:

“In the last few decades, we have made enormous strides in our treatment of cancer – so much so that over 50% of patients can be cured.

“That however leaves a group of patients who still represent disease that requires improved therapies and more importantly, innovative therapies.”

He also emphasised the importance that our supporters and patients have in shaping our success.

“It is very important we come to the Discovery Club to explain the science, not only to our supporters who raise money for us, but also to patients who willingly take part in clinical trials – because without them we would not be able to achieve what we have done so far.”

The Discovery Club provides its members with personal access to the science behind our discoveries. Through special events and updates, it is an opportunity to speak directly with the people who are working towards better outcomes for cancer patients and learn more about our research.

Read more

Cancers of unmet need






As Head of Cancer Therapeutics, Professor Chopra leads teams of chemists, biologists and clinicians who specialise in the treatment of cancer and are focussed on finding new targets for treatment for patients with high unmet need – where effective treatments are not yet available.

During the reception, he highlighted three types of hard-to-treat ‘stealth cancers’ where new treatments are urgently needed: ovarian cancer, brain cancer and pancreatic cancer.

These cancers may have unspecific symptoms that make it difficult for doctors to spot earlier, making treatment more difficult.

He also set out how research in the field of immunotherapy – where therapies tap into the body's own immune system as a weapon against cancer – has the potential to revolutionise cancer treatment.

Our amazing supporters

The event also highlighted some recent phenomenal fundraising efforts to support our research.

Bowel cancer patient and fundraiser Tim Morgan presented a cheque for £273,000 to support our bowel cancer research after completing the gruelling 'Dartmoor Demon' cycle ride with his team.

The money raised by Tim is already helping Dr Marco Gerlinger, Team Leader in our Centre for Evolution and Cancer, to understand drug resistance in advanced bowel cancer, to improve outcomes for patients with the disease.

There was also an official thank you for Lynn Lucas, joint founder of the Chris Lucas Trust, who has worked tirelessly with her husband Lynn to support our research into rhabdomyosarcoma, a rare childhood cancer which took their son Chris in 2000/ The Trust has raised over £1 million for research at the ICR through flagship events such as the Great North Bike Ride.

Their support has helped Professor Janet Shipley's lab develop a genetic test to better classify rhabdomyosarcoma patients into low and high risk groups that decide treatment intensity.

Thank you

The ICR’s Chief Executive Professor Paul Workman added his thanks to all of those who support our work.

He said: “At the ICR, discovering and developing treatments that will outsmart and benefit cancer patients is at the heart of everything we do. We are working to develop new drugs including those that target especially challenging and novel targets – drugs which we hope will improve the survival rates of cancers that remain hard to treat.”

The Discovery Club is our high-level giving club whose members help us to drive forward our scientific strategy through philanthropic investment in key organisational priorities.

If you would like to find out more about membership, please contact Hannah Joyce, Deputy Director of Philanthropy.

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