Newsletter #3

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Newsletter – George Pantziarka TP53 Trust Charity Ball! Molly McQueen, with her mum Katie, organised a spectacular charity ball in Kilmarnock, Scotland to support the Trust and another cancer charity. It was a great opportunity to spread the word on … Read More

Newsletter #2

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Newsletter – George Pantziarka TP53 Trust Ultra Marathon Runners As we kick off this quarter’s newsletter, there’s really only one place we can start.   Everyone at the George Pantziarka TP53 Trust would like to send our congratulations and thanks … Read More

SPAGN – Joining Sarcoma Patients Globally

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Sarcomas are some of the ‘core’ cancers associated with Li Fraumeni Syndrome (LFS) – including soft tissue sarcomas like rhabdomyosarcoma in children or leiomyosarcoma in adults, and bone sarcomas such as osteosarcoma. While rare in the general population, sadly these … Read More

Newsletter #1

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Newsletter #1 George Pantziarka TP53 Trust Newsletter Quarterly Newsletter The MILI Trial The long-awaited MILI (Metformin In Li Fraumeni Syndrome) trial is almost ready to start recruiting! This is a world-first trial that will test whether a drug used to … Read More

SIGNIFIED

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As has been repeatedly shown in studies, including the UK SIGNIFY study in 2017, annual whole-body MRI (WBMRI) can detect cancers early, when they are more treatable, for people with Li Fraumeni Syndrome (LFS). While it has been recommended for … Read More

ON-HOLD – New Update Due Soon!

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LiFTS: Li Fraumeni over Time Study – tracking changes in LFS over time So much about LFS is unknown. We know that for most people with LFS there’s an inherited mutation in the TP53 tumour suppressor gene. Except for those … Read More

FOSTERing change in Osteosarcoma

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Osteosarcoma is the most common of the bone cancers affecting children and adolescents. It’s also one of the most common of the cancers that affects people with Li Fraumeni Syndrome (LFS). It was the cancer that ultimately killed my son … Read More

MILI Trial – Funding Approved!

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We are very happy to confirm that we finally have finding from the NIHR and MRC to go ahead with the Metformin in Li Fraumeni Syndrome (MILI) trial that we’ve discussed many times over the last few years. This is … Read More

Arsenic Trioxide for Li Fraumeni Syndrome?

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Having a mutated TP53 gene wouldn’t be such an issue if there was a way of fixing the mutant p53 proteins that the gene produces. It’s not such a crazy idea – there are already some experimental drugs being produced … Read More

Having a brother or sister with LFS

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By Louis Pantziarka When I was twelve years old my older brother, George, died of cancer. It sounds obvious that something like that would change you and yet at the time you don’t see it. Life goes on around you, … Read More

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