Liz Clarke-Saul was diagnosed with adamantinoma, a rare form of bone cancer in 2001 at the age of 12. Following multiple surgeries, Liz had her leg amputated in 2003, when she was just 14 years old. In 2018, Liz’s cancer returned and spread to her lungs. Liz sadly passed away in July 2020.

In May 2019, Liz launched a Special Fund with the Bone Cancer Research Trust, called The Liz Clarke-Saul Fund, because she was determined to change the landscape of adamantinoma research and make an impact. She felt this was crucially necessary, as there was no research into new treatments for the disease, so treatments hadn’t changed since the 1970s.

The Liz-Clarke Saul Fund has so far raised enough funds for the Bone Cancer Research Trust to award not just one, but two, pioneering research projects as part of the UK’s first adamantinoma research programme.

Following our announcement for the adamantinoma research grant calls, Liz made an incredibly moving speech at the Bone Cancer Ball 2019 and said:

I’m under no illusion that this research will save my life, but the hope is that the future me will have more answers and options than I do now.

About the new research projects

Surgical intervention is successful in most adamantinoma cases. However, recurrence can occur and in approximately 30% of patients, the cancer will spread. There are currently no effective treatments for adamantinoma beyond surgery. The two new pioneering research projects funded by The Liz Clarke-Saul Fund aim to address this.

One of the research projects will investigate if a protein already identified in the spread of another primary bone cancer also controls the spread of adamantinoma. The second will further investigate potential new targets for future treatment options that could be used in addition to surgery.

Liz’s parents and husband, said:

Liz wanted there to be hope for future adamantinoma patients. We are delighted that her Fund is now able to support these two fantastic projects which is the first step along the way to making her legacy a reality. Whilst we are enormously sad that Liz did not live to see the start of this research into her condition we know that she was very proud to have reached her initial fundraising target and we want to thank everyone who has supported us over the last two years.

Zoe Davison, Head of Research, Information and Support at the Bone Cancer Research Trust, said:

We would like to send our deepest condolences to Liz’s family and friends. Liz was such an inspiration to us all and on behalf of everyone at the Bone Cancer Research Trust and every patient who will face a diagnosis of adamantinoma in the future, we would like to thank Liz and her family for everything they have done. The adamantinoma research programme is Liz’s legacy and we will always remember her for her determination and strength in making this research happen.

To read more about The Liz Clarke-Saul Fund click below.

The Liz Clarke-Saul Fund

If you would like to find out more about the two new research projects, please see below.