Ruby's 'Live Kindly, Live Loudly' Fund is a Special Named Fund at CCLG raising money for research into T-cell lymphoma and leukaemia in memory of 18-year-old Ruby Fuller. Ruby was 17 years old when diagnosed with T-cell lymphoblastic non-Hodgkins lymphoma in 2019, which developed into leukaemia.
Ruby's Mum, Emma, tells her story.
Ruby was a happy, healthy 17-year-old in the middle of her A-levels when she suddenly became unwell in June 2019. Initially misdiagnosed as allergies, her worsening symptoms eventually led to the discovery of a large tumour caused by a rare and aggressive blood cancer, T-cell acute lymphoblastic lymphoma.
Ruby went through 10 months of gruelling treatment – intensive chemotherapy, radiotherapy and a stem cell transplant – spending over 200 nights in hospital. The side effects were brutal – she lost a lot of weight, developed peripheral neuropathy that left her unable to walk more than a few steps, and at different stages in her treatment developed sepsis (twice) and a fungal lung infection, requiring transfers to intensive care.
The NHS left no stone unturned in trying to save her, but ultimately her cancer proved to be unresponsive to all known treatments. She died in May 2020, at the height of the COVID-19 lockdown.
Ruby was kind and smart and the life and soul of the party. She had a fantastic sense of humour which kept us all going through even the darkest times. And she was so brave. She wasn't scared of dying, but she was scared of how others would be affected by her death. Ruby believed that 'being kind' is the most important thing in the world: to people, animals, and the planet. As a teenager, she really found her voice – as an activist on climate marches and political protests, and as head girl at her school. Knowing she didn’t have long to live, she asked to be remembered by the motto ‘Live Kindly, Live Loudly’.
After she died, Ruby's consultant told us that they just haven't yet figured out how to successfully treat T-cell blood cancers when they relapse, but how she fervently hoped that they would very soon. The only way they will do that is with funding. That’s why we’ve set up this fund with CCLG in Ruby’s memory.
We want to improve the chances of others who are unlucky enough to be diagnosed with this in future. In her memory, her family set up this fund to support research into T-cell blood cancers, hoping to improve outcomes for others in the future.
So far, Ruby's family and friends have raised nearly £300,000 through an incredibly array of activities including a postcard auction, with postcards submitted by famous celebrities and artists, auctions featuring items such as a Coldplay guitar featuring Ruby's motto signed by the band, a comedy evening starring Mel Giedroych and Kerry Godliman, dinner parties hosted by Wagamama's head chef (Ruby was a big fan of Wagamama) and sponsored activities ranging from marathons and sky dives to head shaves and abseils.
They've also run a couple of auctions with one of which featured a Coldplay guitar signed by the band. The fundraising has given Ruby's family and friends something positive to pour their grief into, and the money raised to-date has supported four different research projects.
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News
Ruby's Funds go into vital blood cancer research
Remembering kind-hearted Ruby one year on
London tube challenge for Ruby
Research projects funded
Investigating how regulatory regions of the genome communicate with cancer causing genes
Identifying a new type of blood cancer to improve the outlook for patients with acute lymphoblastic leukaemia
What factors affect the survival of children and young people with high-risk acute lymphoblastic leukaemia?
Understanding why some childhood blood cancers are incurable.
Fundraising pages
Text CCLGRUBY to 70085 to donate £5.
CCLG will receive 100% of your donation. You may also be charged for one text message at your network’s standard or charity rate.
You can make a donation or pay in funds raised by cheque, payable to CCLG, to CCLG, Century House, 24 De Montfort Street, Leicester LE1 7GB. Please ensure you make it clear that the donation is for Ruby's 'Live Kindly, Live Loudly' Fund so that your donation is allocated to the correct fund.