Donations to Funding Rhabdomyosarcoma Cancer Research
2006 Donated £49,000
2007 Donated £49,102
2008 Donated £28,522
2009 Donated £37,037
2010 Donated £20,413
2011 Donated £67,575
2012 Donated £101,148
2013 Donated £103,711
2014 Donated £33,321
2015 Pledged 300,000
2016 Donated £39,400
2017 Donated £57,200
2018 Donated £75,000
2019 Donated £125,000
2020 Donated £20,000
2021 Donated £75,000
2022 Donated £95,000
The Chris Lucas Trust
The Chris Lucas Trust was set up by teenager Chris's parents, Lynn and Lynn, after he sadly died from rhabdomyosarcoma – a cancer that resembles muscle tissue – in July 2000. Lynn and Lynn have so far raised over £2 million for research into rhabdomyosarcoma at the ICR and continue to fundraise through flagship events such as the Great North Bike Ride.
Chris Lucas Trust donates £300,000 to rhabdomyosarcoma research
Professor Janet Shipley and her sarcoma molecular pathology team
The Chris Lucas Trust has made another generous pledge of £300,000 to support rhabdomyosarcoma research at The Institute of Cancer Research, London. The charity, which was set up after teenager Chris’s tragic death from the disease in July 2000, has so far raised over £1m for research into rhabdomyosarcoma and continues to fundraise through flagship events such as the Great North Bike Ride.
Before being diagnosed in July 1997, Chris was a strong 15-year- old boy, who played rugby, cricket and basketball. After twice battling back from the disease, achieving great GCSE results and starting out in a career in graphic design, the cancer finally took Chris after three years. The Chris Lucas Trust hopes to enable the translation of new molecularly targeted drugs rapidly into the clinic so that other families don’t suffer the same fate.
Donations from the trust have already contributed to studies that found combining two separate molecularly targeted therapies could block processes driving growth 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, under the supervision of Professor Janet Shipley – one of the world’s leading authorities on research into soft tissue sarcomas. Rhabdomyosarcoma is a tumour that resembles muscle tissue, and at present there are no effective targeted treatments for the aggressive forms of the disease.
Mrs Lynn Lucas, Chris’s mum, told us: “We are delighted to continue supporting this much-needed research programme. Our fundraising is hard work but extremely rewarding and we chose the ICR since we believe in their commitment to develop new drugs to help children and teenagers suffering from cancer to live longer, and ultimately find a cure for rhabdomyosarcoma.”
Lynn and Lynn Lucas (centre) visiting the lab of Professor Janet Shipley (left) at the ICR (photo: Lynn Lucas, Chris Lucas Trust)
26th January 2017
Fundraiser recognised by Prime Minister with Points of Light Award after raising millions for ICR research
Prime Minister Theresa May has celebrated the dedicated fundraising of Lynn Lucas, who set up a trust to fund research into a rare form of cancer in memory of her son Chris.
Chris’s parents, both called Lynn, lost him to a rare sarcoma called rhabdomyosarcoma in 2000. Since then they set up the Chris Lucas Trust and have raised more than £2 million towards research into the disease at The Institute of Cancer Research, London.
Recognising volunteers who make change
In recognition of their incredible efforts Lynn, who lives in North Tyneside, was chosen for a Points of Light Award, which recognises outstanding individual volunteers who are making a change in their community.
Lynn was surprised to receive this award: “I was very shocked to get the call and be chosen for this award. Things like this don’t happen in Newcastle!
“It’s an honour that I want to share with my husband – we’ve both dedicated our lives to this cause. It started during Christopher’s illness when we raised money for the local hospital where he was being treated and, since he died, raising money for research that offers hope for other people who develop this rare form of cancer.”
A vital contribution to research
In a personal letter written to Lynn, Prime Minister May wrote: “Your fundraising efforts are making a vital contribution to research into sarcoma. Your important work through the Chris Lucas memorial fund is a wonderful tribute to the memory of your son.”
The Prime Minister's letter (left) and the Point of Light Award. Click the images to view in full screen.
With her husband, Lynn has raised millions of pounds for research at the ICR into Chris’s condition. They started an annual sponsored cycle – the Great North Bike Ride – and a Christmas fundraiser called the Jingle Bell Walk, among many other creative fundraising activities.
Through the Trust, Lynn and Lynn hope to improve the outcome for patients with rhabdomyosarcomas and drive new targeted drugs into the clinic where they can help other families.
The importance of the Chris Lucas Trust to ICR research
The Trust has already contributed to some important research at the ICR. One study showed that incorporating a genetic test into assessment of the cancer is superior to a visual microscopic approach in deciding what treatment intensity to give patients – an approach now being introduced into an international clinical trial for rhabdomyosarcoma.
Another study showed that combining two targeted therapies could block processes driving the growth of rhabdomyosarcoma cancer more effectively than either alone.
A recent pledge by the Chris Lucas Trust enabled the ICR to employ two scientists to work exclusively on rhabdomyosarcoma. These researchers are being supervised by Professor Janet Shipley, who is a world leader in researching these kinds of sarcomas.
Professor Shipley is hugely grateful for their support: “The Lucases and the supporters of their charity have tirelessly raised funds for our research for many years. Lynn is hugely deserving of this award – her support has been tremendous and so important to my research here at the ICR as well as future rhabdomyosarcoma patients.”
Chris was first diagnosed in 1997 – he was a strong, sporty teenager, who twice battled back from his cancer before it finally took him in 2000. Although treatments have improved since then, once the disease has become advanced it remains very difficult to treat. But in Christopher’s memory, Lynn is helping to fund research that offers hope of a breakthrough.
Lynn said: “Our fundraising is hard but it’s extremely rewarding – the research into Chris’s condition is desperately needed. Through setting up our charity, we have met and been contacted by so many other families who have been affected by rhabdomyosarcoma. We believe in Professor Shipley’s and the ICR’s commitment to finding new, more effective and kinder treatments for patients like Chris with sarcoma.”
26th March 2012
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 Trust, Cancer 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 Curie, Ligue 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.
The Institute of Cancer Research (ICR) is one of the world’s most influential cancer research institutes.
Scientists and clinicians at the ICR are working every day to make a real impact on cancer patients’ lives. Through its unique partnership with The Royal Marsden Hospital and ‘bench-to-bedside’ approach, the ICR is able to create and deliver results in a way that other institutions cannot. Together the two organisations are rated in the top four cancer centres globally.
The ICR has an outstanding record of achievement dating back more than 100 years. It provided the first convincing evidence that DNA damage is the basic cause of cancer, laying the foundation for the now universally accepted idea that cancer is a genetic disease. Today it leads the world at isolating cancer-related genes and discovering new targeted drugs for personalised cancer treatment.
As a college of the University of London, the ICR provides postgraduate higher education of international distinction. It has charitable status and relies on support from partner organisations, charities and the general public.
The ICR’s mission is to make the discoveries that defeat cancer. 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.com