Children’s Cancer and Leukaemia Group (CCLG) has funded a new lymphoma research project, thanks to five fundraising families.
Elliott’s Army, #TeamJayden, Lila’s Pink Bunny Fund, Little Miss Niamhie B and Annika’s Challenge have all contributed to the new research.
Led by Professor Suzanne Turner at the University of Cambridge, alongside clinician scientist Dr Lucy Hare, the project will explore why some children relapse after being given a new type of treatment, called tyrosine kinase inhibitors (TKIs), or quickly after finishing the treatment.
They hope to use their findings to develop treatment strategies and combinations that can cure hard-to-treat ALCL patients, such as those who have relapsed.
Originally developed for adults, TKIs are gradually being introduced to treat children with anaplastic large cell lymphoma (ALCL) that have changes in the anaplastic lymphoma kinase (ALK) gene, which helps to control cell growth. As the treatment targets cancer cells specifically, it is hoped the new medicine will prove to be a safer treatment with fewer long-term side effects.
However, the TKIs do not always work, with the cancer cells resisting the treatment, and doctors need to know why or how best to use TKIs to help cure all children they’re used to treat.
Prof Turner said:
This project will investigate a type of TKI called an ALK inhibitor, which is currently approved for use in adults and only in limited settings in children. We hope to learn how to best use these drugs so that children are cured of their cancer using the kindest therapies possible.
We are excited to work on this project, as we look to use cutting-edge techniques in the lab to produce meaningful information that is directly translatable to patients in the clinic.
Lisa set up Annika’s Challenge after her daughter, Annika, was diagnosed with ALCL, with the ALK genetic mutation in 2019. Despite receiving intensive chemotherapy regimens and a bone marrow transplant Annika has relapsed several times, and while a TKI called lorlatinib has helped stabilise the cancer, it cannot cure her.
Lisa said: “This is such a rare cancer, which gets little money invested into it for research. It’s amazing that our funds money has helped contribute to this incredible research.”
Lisa spoke of her gratitude for every contribution which has helped fund this pioneering research that offers hope for the future of a cure:
There’s been so much hard work by all our friends and family that have put so much time into doing fundraising activities for us.
All the effort and time that they've taken out of their day and their bank balances, to put towards helping Annika and other children like her. We are so thankful. With all the other Special Named Funds, and all those amazing people that have completed activities for them as well, we've all managed to come together and team up to do something incredible that may help to cure our children in the future, and that's amazing.
Julia set up Lila’s Pink Bunny Fund after her daughter, Lila, was diagnosed with ALCL in June 2017 and experienced multiple relapses. She spoke about the importance of this research project and the potential impact it could have for children who relapse.
She said:
Because of the success rate of initial treatment of ALCL, there is little known about research for children who relapse with this disease, and there is almost non-existent funding and support into new treatments for this.
Therefore, there’s an urgent need to support studies that can demonstrate that long-term remission can be achieved with drugs that are kind and don’t increase the risk of short-term and late effects for children.
Suzanne’s project aims to understand TKI drug resistance in children with relapsed ALCL, children like my daughter. We are hopeful the results from this project could benefit all families facing an ALCL relapse and improve their children's outcomes.
Children are meant to live long lives. Cancer drugs need to make this possible.
We are thankful to our family, friends and selfless donors who over the years have supported us in our quest to raise funds and who have given us the energy to keep going even in our most difficult times.
Elliott’s Army was set up in 2019 after five-year-old Elliott was diagnosed with ALCL in October that year. He sadly died less than six months later, following a relapse. Through the Special Named Fund, Elliott’s friends and family wanted to fund research that would help find better treatments for children with ALCL.
Elliott’s mum, Andrea, said:
ALCL is such a very rare cancer and needs all the support and funding it can get. For Elliott’s Army to be helping continue this fight is amazing.
We are so very proud of Elliott, he was an extremely unique character with a will to fight like any superhero. If we can help in any way possible, we will and will do it in Elliott’s memory.
Irena set up #TeamJayden in support of her son Jayden when he was diagnosed with ALCL in February 2022 after months of GP and hospital appointments. Following extensive chemotherapy, Jayden has now been cancer-free for two years.
Irena said:
I set up the fund to raise awareness and in the hope that one day there will be effective treatments for all children with ALCL. While Jayden has been very lucky, I'm aware that there are children out there who have not. It would be very rewarding to one day find a cure and to have been part of it. I think that would be the most important thing.
Looking at Jayden every day reminds me how short life could be, the importance of living life in the now and helping others where we can.
Vicki Brunt, CCLG Head of Fundraising, said: “The dedication and drive of our Special Named Fund families and their supporters is crucial to helping us develop kinder treatments and improve outcomes for all children with cancer. We can’t thank them enough.”
Prof Turner added: “Without funding from the Special Named Funds, this research could not be conducted. We are so incredibly grateful for the support and help provided by the parents, families and friends of children with ALCL.
“We are in awe of their dedication, enthusiasm and energy, raising funds for research whilst experiencing very difficult times. We hope that we can repay them by conducting research that will benefit children diagnosed with ALCL in the future.”