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
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
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
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
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
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
A clinical trial of the antidiabetic drug metformin is being developed for adults with Li Fraumeni Syndrome (LFS). This is the MILI trial – which we’ve discussed before. The trial aims to test whether metformin can reduce the incidence of … Read More
Chemotherapy is hard on kids, as any parent of a child who has had cancer treatment can confirm. For parents of children with Li Fraumeni Syndrome (LFS) we try and not to think too much about what the long-term effects … Read More
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