A pioneering research project funded by a Children’s Cancer and Leukaemia Group (CCLG) Special Named Fund is investigating how the wrong genes are being instructed in patients with T-cell leukaemia in the hope that the knowledge gleaned will inform treatments to stop cancer cells surviving.
The project, led by Dr Lisa Russell at Newcastle University Centre for Cancer, is funded by Ruby’s ‘Live Kindly, Live Loudly’ Fund, set up in memory of 18-year-old Ruby Fuller.
Ruby, from Herne Hill in south London, died two years ago in May 2020, after first being diagnosed with T-cell lymphoblastic non-Hodgkin lymphoma in July 2019, which developed into leukaemia.
The fund was set up by her parents Emma and Dylan after Ruby left a list of ways that family and friends could remember her by, which embodied her caring and compassionate nature. This list included celebrating kindness and calling out injustice by sharing her motto - ‘Live Kindly, Live Loudly’ - far and wide, and helping other young cancer patients through fundraising.
Since then, the pair, alongside Ruby’s sister Tabitha and a legion of dedicated supporters, have raised more than £140,000 through various events and challenges, including wing walks, cycle rides, sky dives, comedy nights and cook-alongs, to fund this new study.
Emma said:
“Ruby would be thrilled to have funded this new research project. She asked us to donate some of her savings to research after she died and might have imagined £10,000 or so being donated in her name.
“We'd reached £100k within a year of setting up the fund, which is incredible.
“I'm really excited that we've been able to fund something relatively soon after setting up the fund, thanks to all the fundraising that's been done in Ruby's memory.
“It makes us so happy because it would make Ruby so proud to know that was being done in her memory.
“Of course, like everyone who's been horribly affected by cancer, I'm impatient to see new cures and better treatments.
“It's incredibly reassuring to know there are people out there beavering away trying to find better solutions, I think that's a huge help as a bereaved parent.”
The new project - titled ‘Identifying critical interactions between super-enhancers and proto-oncogenes: driver events in T-cell acute lymphoblastic leukaemia’ - will be looking into the genetic code to understand how the wrong genes are being instructed to switch on in patients with T-cell acute lymphoblastic leukaemia (TALL).
The genes found in the genetic code control cells, deciding what proteins are needed, when to multiply and other functions. They need instructions to know when they should be switched on or off in healthy cells, and these instructions are called ‘enhancers’. In some blood cancers, some of these enhancers move around within the genetic code, and end up instructing the wrong gene.
Dr Russell and her team at Newcastle University want to find out how these enhancers are communicating with the wrong genes to see whether there is a way to stop them. If doctors could administer medicines that stopped these enhancers from turning the wrong gene on, it could stop the cancer cells growing.
Dr Russell and her team plan to investigate a particular type of enhancer that has been found to be present in around 20% of patients with T-cell acute lymphoblastic leukaemia.
Dr Russell said:
“This project has been developing and growing for a while now. As a team, we are all really excited to get this underway so we can begin to start answering all the questions we have.
“Our hope is that the new knowledge we gain about how these enhancers communicate with the wrong genes means we are better prepared to think of ways to target these cells and improve the outcome for patients with blood cancers.
“Enhancers are involved in many different blood cancers. The knowledge gained from this work has the potential to reach many different blood cancers and the people affected by these.
“With this new knowledge, we hope to prevent cancer cells from surviving.”
Emma said the fundraising – along with raising awareness of the cause – has been incredibly important to Ruby’s family and friends, and a fitting way for people to remember someone who cared so deeply about helping others.
She said:
“It's tremendously helpful to have something to channel our grief into. And it's been really helpful for friends and family, too.
“Losing a child is so awful, and it impacts on lots of people. So many people wanted to help, but they weren't sure what to do - this gives them a great focus. And it's something that family and friends all over the world can get involved in.
“We have lots of family in the States, and good friends in Australia; they've joined in with some of our online events.
“The response has been absolutely amazing. We've had 21 different fundraising events so far, only a couple of which we've organised ourselves - the others have been set up by friends and family, Ruby's teachers and even total strangers!”