“I want to change the landscape of adamantinoma for patients in the future so that another me, in however many years’ time, won’t be sat down by their oncologist and told that there is nothing they can do.”
Liz Clarke-Saul
Liz Clarke-Saul Fund
Supporting pioneering research into adamantinoma
Liz’s Story in her own words
Liz wrote these words shortly after her re-diagnosis of adamantinoma:
"Adamantinoma is incredibly rare - it accounts for less than 1% of all bone cancers, and bone cancers account for around 1% of all new cancer diagnoses in the UK. Because it’s so rare very little, if any, funding is assigned specifically for it but we want to change that. Funding research into adamantinoma is unlikely to save my life but it may well change someone else’s. And if I don’t raise funds for my little rare mutating cancer cells - who will"?
"I was first diagnosed with adamantinoma in 2001 at the age of 12 and following multiple surgeries, I had my leg amputated due to the disease in 2003 when I was 14. In 2018 I was having the time of my life. I had, and still have, a job in communications which I love. I had an even better job on the GB Paracycling team, and having missed out on selection for Rio, firmly had Tokyo 2020 in my sights.
I was also due to be married in September to my boyfriend of 7 1/2 years. I had raced in Belgium at the start of the season and had picked up a nasty chest infection. I raced the TT as best I could, and my power numbers weren’t too bad, but I sat out of the road race feeling exhausted. I came home and couldn’t shake a nagging cough and some mild pain in my back and shoulders wasn’t budging with the usual physio so an ultrasound was done".
"When a doctor says, your rib looks a bit cloudy, maybe it’s a stress fracture, I’m not sure, let’s do an X-ray, you kind of know something isn’t right. When they suspect you have pneumonia because it looks like fluid in your chest and send you for a CT scan, you start to panic. But when the consultant says you have some suspicious shadows on your lungs and, given your history, it’s highly likely that your cancer is back, your mind goes blank. And then you hyper-ventilate, your mind kicks into overdrive and you can’t even see straight. The tube journey home is utter torture.
In the blur of scans, biopsies, and draining fluid from my lungs - 2.5 litres if you’re interested, which is quite a lot to be carrying around and not noticing - it was confirmed my cancer was back and because it’s metastasised it is incurable.
But there was no way that was going to ruin our 2018. Jack and I got married - twice. We spent our first honeymoon in the Macmillan Cancer Centre starting radiotherapy but had much more fun on our second honeymoon spending two weeks in Greece. I rode my bike, had more radiotherapy, and spent a lot of time seeing friends and family. And laughing, we have laughed a lot and continue to - because what’s the point if you can’t laugh! We’ve settled into a routine of scans, working, last-minute holidays and now my husband and I want to create this fund to change the landscape of research into adamantinoma in the UK. It’s not a lot, but it’s a start".
Supporting the Liz Clarke-Saul Fund
Two years after her second diagnosis Liz lost her life to this cruel disease when she was just 31 years old.
Liz wanted there to be hope for adamantinoma patients in years to come. Since Liz set up the Fund, we have funded two pioneering research projects which are working on adamantinoma progression as well as identifying biomarkers which will assist in accurate diagnosis of the disease. We are now working towards funding the testing of some exciting new drugs. We are so proud to be involved with this ground-breaking research, and remember Liz’s wish that in the future there will be treatment options that prolong life and, one day, a cure.
Thank you for reading Liz's story. Our beautiful girl was taken from us far too soon, with so much life left to live. As we go forward without her we would greatly appreciate any contribution or support you can give, however large or small, as together we can make a difference.
Jack Clarke-Saul, Lesley and Jeremy Saul
News
International funding awarded to improve diagnosis and treatment target's for adamantinoma
UK’s first ever adamantinoma research programme thanks to one inspirational person, Liz Clarke-Saul.
Adamantinoma patient raises funds for the UK’s first ever research programme
Research
An interview with Dr Katie Finegan about her adamantinoma research grant
Identification of novel biomarkers for the management of adamantinoma
Potential of proteins to monitor and treat adamantinoma relapse and spread
An update from Dr Mark Morris, speaking at our North Conference in 2022, on his ongoing research project into adamantinoma funded by the Liz Clarke Saul Fund.
Fundraising Pages
Gallery
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You can make a donation or pay in funds raised by cheque, payable to Bone Cancer Research Trust, to Bone Cancer Research Trust, 10 Feast Field, Horsforth, Leeds, LS18 4TJ. Please ensure you make it clear that the donation is for The Liz Clarke-Saul Fund so that your donation is allocated to the correct fund.
100% of donations to The Liz Clarke-Saul Fund will go to adamantinoma research.