Parents who lost daughter to blood cancer fund research project

A mum and dad raising money for research into blood cancer in memory of their 18-year-old daughter have funded a vital new research project.

Ruby Fuller, from Herne Hill, was 17 years old when in July 2019 she was diagnosed with T-cell lymphoblastic non-Hodgkin lymphoma, which developed into leukaemia.

Following her death in May 2020, her parents, Emma and Dylan, set up a Special Named Fund with Children’s Cancer and Leukaemia Group (CCLG) 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 younger sister Tabitha and a legion of dedicated supporters, have raised more than £140,000 for CCLG through various events and challenges, including wing walks, cycle rides, sky dives, comedy nights and cook-alongs, to fund this new study.

The pioneering project, led by Dr Lisa Russell at Newcastle University Centre for Cancer, 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.

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.”

The new project – entitled 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).

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.

For more about the project, visit: https://www.cclg.org.uk/our-research-projects/regulatory-regions-leukaemia

Pictured top: From left, Ruby, sister Tabitha, mum Emma and dad Dylan (Picture: Fuller family)