“Christopher would be so amazed by what we’ve achieved”

Chris Lucas was 15 years old when he was diagnosed with rhabdomyosarcoma. A sporty teenager who played rugby, cricket and basketball, he would go on to achieve great GCSE results and start a career in graphic design. But despite twice battling back from the disease, he died three years after diagnosis.

“Parents shouldn’t outlive their children,” says Chris’ mum, Lynn. “I know people don’t want to think about these things, but they can happen to anybody.

“We’ve met a lot of lovely families but for the wrong reasons. I’m in a club with people that none of us want to be in. We shouldn’t be in it. I’m still angry – why us, why my Christopher?"

After Chris’ death in 2000, Lynn and her husband Lynn set up the Chris Lucas Trust and dedicated their lives to raising money for research that offers hope for other people with the same cancer as Chris – rhabdomyosarcoma.

“We thought, ‘we must do something’”

Lynn and Lynn first started fundraising when Chris was still being treated in hospital.

“We thought, ‘we must do something’,” Lynn says, “and the idea was that we would keep the ward going with whatever they needed, like pool tables and hi-fis, which we did.

“My husband, who worked in the NHS at the time, got in touch with Professor Sir Liam Donaldson and said ‘could you investigate what’s going on out there with rhabdomyosarcoma research?’ and he came back and said ‘not a lot’.

“Sadly, after a clinical trial we lost our Christopher – and we thought, ‘what else can we do?’ We didn’t want any other family to go through the torment, of what we had to go through – it was a living hell. It affected everyone - family, our other son, friends so we set up a charity, the Chris Lucas Trust.

“Initially it was going to be up in Newcastle which is where we live. We had no idea what was going to be involved. We wanted to set up a research lab and were told it was going to cost a lot of money – at that time a microscope alone was £25,000.

“But then we were put in touch with The Institute of Cancer Research - at first we dealt with Professor Kathy Pritchard Jones, and she was brilliant. She helped us get our charity number from the charity commission and then Professor Janet Shipley took over and we just bonded.”

This was the start of the Lucas’ relationship with the ICR as one of our valued family charity partners.

Enabling ground-breaking research

In recent years, funding from the Trust has supported Professor Janet Shipley and her team at the ICR, who collaborate closely with colleagues at The Royal Marsden NHS Foundation Trust

The Trust has helped Professor Shipley’s lab develop a genetic test that signals which patients have a higher risk of aggressive disease. It also funds biopsy samples from children with rhabdomyosarcoma living across Europe, which are crucial in allowing scientists to make progress in the lab.

Professor Janet Shipley, Leader of the Sarcoma Molecular Pathology Group at The Institute of Cancer Research, said:

“I first met them more than 15 years ago and have since been humbled and inspired by their incredible commitment to tirelessly rallying support for research into rhabdomyosarcoma. The Chris Lucas Trust that they established in memory of their son has enabled ground-breaking research at the ICR.

“Over the years, we have been able to identify molecular markers of high-risk cancer in patients with rhabdomyosarcoma and to define less toxic and more bespoke potential treatments for these patients. Through clinical research, this is now undoubtedly making a difference to the usually young people who develop this rare type of cancer.” 

As world-leaders in the study of cancer in children, teenagers and young adults we are so grateful for the generous support of our family charity partners, who work tirelessly to fund our research.

Read more

“We just feel we’re doing the right thing”

Last week more than 1,200 cyclists took part in the 24^th Great North Bike Ride, which was established by Mr and Mrs Lucas as a major fundraiser for The Chris Lucas Trust.

Lynn says their motivation to continue raising money for our research is driven by seeing the incredible scientific progress that’s been made over the years:

“We were one of the first charities set up to fund research into rhabdomyosarcoma – we started to get samples and biopsies for the ICR to look into to try and find out if there was a link to other cancers.

“It's 24 years now since we lost Christopher and we haven’t found a cure and we haven’t found the ultimate medication, but the children are surviving longer and they are finding out more about why rhabdomyosarcoma happens and why people go into remission and then relapse – we just feel we’re doing the right thing.

“We feel that if all the money goes in one place you’re going to get better results than funding a little research project here and another one there. We wanted to put everything in one place.

“We’ve been down to the ICR a few times to meet the researchers and we know Janet quite well – she’s from Newcastle our area and she’s done our bike ride and we get on great with her. And we know that the money we make goes into the best possible place. Every penny we raise goes to the ICR because we feel that you are doing the best and that you have contacts all over the world.

“Ideally we want to find a cure but that might not happen in our lifetime – we just want to keep these children alive and let them have their childhood, that’s not a lot to ask for is it?"

“The answer’s there, we’ve just got to find it”

Chris’ parents recently both received a Member of the Order of the British Empire (MBE) in honour of their commitment to fundraising. They will travel to Buckingham Palace to be receive their honours this Autumn.

 “To be recognised by the King’s Birthday Honours means the world to us and all our close family and friends who support what we do, they’ve made the charity what it is,” says Lynn.

“Christopher would be so amazed by what we’ve achieved. I used to be very shy and found it difficult talking to strangers.

“Because of what I’ve gone through nothing can hurt me anymore and I am so passionate about research, I’m not afraid of speaking to anyone now.

“I think he’d be proud of his mum and dad.

“We don’t want any other family to go through the torment of what we had to go through so anything we can do to help the ICR and research into rhabdomyosarcoma we’re 100 per cent for that.

“Because of progress, because of research we can move forward and who’s to know in three year’s time what else we might find. The answer’s there, we’ve just got to find it. I hope we will.”

We are striving to improve the lives of people with all types of cancer – including those with the most challenging to treat. With your support today, we can continue to make more discoveries, find more cures, and save more lives.

Donate now