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Childhood cancer fundraiser named NHS Hero for supporting ICR research

21
May
2018

Lynn Lucas co-founded the Chris Lucas Trust in memory of her son, who died from cancer of the soft tissues. Now she has received the NHS Hero Award for Fundraiser of the Year for her continued support for The Institute of Cancer Research, London. Lydia Brain, our Cancer Stories Officer, spoke with Lynn about her achievements and also met the ICR researcher whose lab has been supported for so long by the charity.

Posted on 21 May, 2018 by Lydia Brain

Lynn and Lynn Lucas at the NHS Heroes award ceremony

Lynn’s son Christopher was diagnosed with stage four rhabdomyosarcoma, a form of sarcoma, back in 1997. He was just 15 years old. 

Lynn told me about him:

“Christopher was a strong and sporty teenager; he played rugby, cricket and basketball. He smashed his GCSE results and was looking forward to a career in graphic design.”

Christopher initially underwent a round of chemotherapy and radiotherapy and was told he was in remission. It was while Christopher was ill that Lynn first started fundraising, and she hasn’t stopped since.

Lynn’s introduction to fundraising

Lynn, with her husband – also called Lynn, organised their first ever fundraiser in 2000. It was a cycle ride and is now known as The Great North Bike Ride.

She was overwhelmed by the support from people who attended and inspired to keep up her good work. The ride has been an annual event ever since and has gone from six attendees to over a thousand. The event now raises in excess of £100,000 a year.

Unfortunately two years after his diagnosis Christopher relapsed and, after two more rounds of treatment, he sadly died on the 15 July 2000.

Since Christopher’s passing Lynn has remained a passionate and dedicated fundraiser. Lynn and her husband started looking for a laboratory that undertook research into Christopher’s type of childhood cancer called rhabdomyosarcoma.

Lynn spoke to Christopher’s doctor, Professor Andy Pearson in Newcastle who put her in touch with Kathy Pritchard-Jones, a Professor of Paediatric Oncology at UCL, who was at the ICR at the time.

Dedicated to researching childhood cancers

Lynn was inspired by the ICR’s dedication to research into childhood cancers and the Lucases decided that they would like to fund a researcher at the ICR to focus purely on rhabdomyosarcoma. Later on Andy transferred across to The ICR and Royal Marsden, and continued to be an important part of Lynn’s life.

The initial cost of funding a researcher and their work for a year was a daunting £100,000. At first, the Lucases weren’t sure they could manage it but Lynn’s husband said to her ‘there is no such word as can’t’. They decided they would do everything they could, even if it meant re-mortgaging the house.

As a credit to Lynn’s efforts, they reached their target in the first year of fundraising and funded their first full time researcher at the ICR.

Soon after the Lucases began supporting the ICR, Professor Janet Shipley became a researcher at the ICR.

Janet described how much of a motivation Lynn has been to her.

“I have met Lynn a few times now, she has visited our lab at ICR and I have met her and Lynn when I was up in Newcastle for meetings. It is always a real pleasure to see her,” said Janet.

“Lynn is a wonderful woman, she is so passionate and bubbly. She is an inspiration to us all here at the lab and to families that she supports who have children with sarcomas.

“We pour our heart and soul into our work here in the lab, and meeting Lynn was so humbling, she really motivates us to keep on working to improve the treatment and outcomes for children with rhabdomyosarcoma.”

The Chris Lucas Trust was set up after teenager Chris’s tragic death from rhabdomyosarcoma – a cancer that resembles muscle tissue – in July 2000. Chris’ parents, Lynn and Lynn, have so far raised over £1 million for research into rhabdomyosarcoma at the ICR

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Lynn’s achievements

Lynn has now been a valued supporter of research at ICR for 12 years. During that time she has funded at least one full-time researcher and for many years her fundraising has been so successful she has been able to support two full-time researchers in Janet’s lab.

Throughout her 18 years of fundraising, Lynn has raised an incredible £2 million.

“No matter what I do, it is the families that fundraise for us that keep me going. It’s a team effort,” explained Lynn.

“I have met some amazing families, sadly for all the wrong reasons.

“Of course, I enjoy doing the fundraising as well!”

When Lynn got the call from ITV to let her know that she had won the award, she couldn’t believe it. ‘I’m not a hero’ was Lynn’s immediate response.

“Being told I had won was just amazing. I had flights booked to go out to America, but I pushed them back. I couldn’t miss the awards ceremony; it is a once in a lifetime event.

“Rhabdomyosarcoma will be talked about on live TV, as well as the amazing research Janet and her team have been doing. It’s a fantastic opportunity.

“As long as I have breath in my body I will carry on raising awareness and fundraising for research into rhabdomyosarcoma.”

The research made possible by Lynn’s contribution

Over the years Lynn’s support has helped enable Janet’s lab to identify a genetic test to better classify rhabdomyosarcoma patients into low and high risk groups that decide treatment intensity.

“Some of the current treatments for rhabdomyosarcoma are very harsh and leave the patients with severe long term side effects, such as loss of mobility, growth impairment, and an increased risk of developing another cancer as a consequence of their therapy,” said Janet.

“Identifying the children that will be cured with reduced treatment will reduce the debilitating side effects post-treatment.

“Our laboratory research has increased understanding of what drives rhabdomyosarcomas at the molecular level. Based on this, we are able to select drugs used in other cancers and diseases and test their potential to treat rhabdomyosarcoma patients using new models of the cancer that we have developed.

“In addition, new targeted treatments are opening up the opportunity for doctors to prescribe personalised treatments for children with cancer based on the activities of specific genes in their tumours.

Turning lab research into a clinical trial

“We are now translating this research into a clinical trial, where genetic testing will identify the low risk patients and we will reduce treatment intensity, as well as identify the patients that may benefit from new treatments. The trial is due to start later this year.

“I am so pleased to be involved in this trial and have the opportunity to translate our research into having a real impact for patients with rhabdomyosarcoma.

“Our team and ICR is extremely proud of Lynn and hugely grateful for all of her hard work and continued support.

“Progress in childhood cancers like rhabdomyosarcoma is a team effort. From our fundraisers, our charity partners, to our scientists and support staff, we are all in it together and Lynn will always be a very special part of our team.”

The Chris Lucas Trust was the first parent-led charity to support the ICR. We have now had over 20 parent-led charities supporting the ICR, making a difference in many childhood cancers.

You can find out more on our family charity partners page.

Tags

fundraising rhabdomyosarcoma family charity partners Chris Lucas Trust
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