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

FOSTERing change in Osteosarcoma


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!


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?


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


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

Attitudes to Whole-body MRI


Have you had or been offered Whole-Body MRI screening? Have you been offered it and declined? We are seeking individuals who have had or been offered Whole-Body MRI (WB-MRI) screening in the UK. If you have a clinical and/or genetic … Read More

LFS Surveillance Protocol – Write to Your MP


The national LFS surveillance protocol, agreed in July 2018, has still not been rolled out nationally across the NHS. Discussions on funding are taking longer than expected, and as reported by Dr Helen Hanson at our LFS UK 2019 meeting, … Read More

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