Newsletter #1

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 treat type II diabetes (metformin) can also reduce the risk of cancer in people with LFS. People recruited to the trial will be randomly selected to either metformin + annual whole-body MRI screening, or screening alone. Having two equal groups of patients means it’s possible to compare the numbers to see whether metformin does or does not make a difference to the risk of developing cancer for people with LFS. The trial is open to all adults with a confirmed TP53 mutation and who are not currently suffering from a cancer. To find out more please take a look at our projects directory – more details on that can be found below.

Tricia Walsh is our ambassador based in Oxfordshire, where she lives with her husband and two teenage children. When she was diagnosed with breast cancer thirteen years ago, she discovered she carried a LFS gene mutation. The consequent change in her treatment protocol probably saved her life – like Chris, she has lost several relatives to cancer. She is available to talk to anyone who needs support.

After George died, Pan and I wanted to do something to help other people/families struggling with a LFS diagnosis. And we wanted something positive to evolve from Georgie’s life and death and to honour his memory in a meaningful way.

What does your role at the Trust entail?

I am Vice Chair. I see my role as taking a lead in organising e.g. the national conference, and in the development strategy of the trust.

What do you enjoy most about working with the Trust?

Being able to make a positive difference to people’s lives, no matter how small.

What is your greatest accomplishment?

Hahaha. My accomplishments in life are small: Getting into a major drama school, playing violin in a band, having a baby at 42, getting a PhD at 55, writing 2 books in my 60s and, hopefully, ‘bagging’ 214 Wainwright fells in the Lake District – 64 down, 150 to go!

What do you do in your spare time?

I’m retired. I love gardening and baking. I’m learning German, in honour of my German ancestors. I love to walk, especially by the sea and on fells. And I’m playing the violin again.

What are you reading at the moment?

Thomas Sowell’s ‘Basic Economics’ because strong/emotional ideas about how the country should be run are not useful without an understanding of the often counter-intuitive nature of economics. It really matters if we want to improve lives, or we can end up having the opposite effect to the one we want.