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 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.

New Ambassadors

We are very proud to announce the first three LFS Ambassadors have been appointed - these are volunteers who will get more involved in the work of the Trust - from providing support to individuals, to working with researchers, to raising awareness of LFS.

Hi, I'm Sonal - I live and work in London. I was diagnosed with LFS at the end of 2020 following my second cancer diagnosis. As someone who is a 'de novo', I've loved connecting with the George Pantziarka Trust and meeting other people going through the same experience. I've recently taken on the role of Ambassador and hope to use my personal experience in a positive way to support people who are newly diagnosed, as well as helping to raise awareness of LFS and of the Trust.

Chris Stevens is our new ambassador based in East Yorkshire, where he lives with his wife Joanne and his daughter Cassie. Chris was diagnosed with LFS in 1997, when there was very little support available. Cassie also has LFS, as very probably did his son Luke who passed away from Osteosarcoma in 2021. Chris is committed to helping the trust raise awareness and to lending support where it is needed. We are lucky to have him!.

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.

Meet The Trustees

In this section we'll get to know one of our trustees a little better - for our first edition, we're starting with Co-Founder and Vice-Chairman, Irene Pantziarka:

How did you get involved at the Trust/why do you do it?

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.

Updates

We will be working with the University of Oxford to carry out some exciting new projects in the future, including identifying LFS patients 'lost' to the system, bringing together UK researchers in LFS and alerting GPs to 'red flags' for LFS patients under their care. Our trustee Stephanie Phillips and our ambassador Sonal are also buddying Oxford students involved in TP53 research.

The Trust once again teamed up with Living LFS to mark LFS Awareness Day on the 20 March, sharing pictures of our trustees wearing blue on our social media.

We're delighted to announce that our next National Conference will be held on 9 September 2023 in central London. Keep your eyes peeled for more details!

What's new on the website this quarter

We've published a directory of open projects recruiting people with Li Fraumeni Syndrome - this includes the MILI trial, LiFTS, SIGNIFIED and ICED. This is your one-stop shop to see what research projects you can join - find it by clicking here .