Newsletter #13

George Pantziarka TP53 Trust - Newsletter

Thank you!

We start this quarter's newsletter with a huge thank you to Daisy and Bert, who've raised more than £1,000 for the Trust.

The couple recently celebrated their diamond wedding anniversary and marked the occasion with a mammoth fundraising effort in honour of their grand-daughter Rebecca, who has LFS.

Thank you to Daisy, Bert, Rebeccca and their generous family and friends for supporting us in our work.

What's new with us?

Access to annual whole-body and brain MRI (WBMRI) is the number one issue that we are contacted with by people with LFS in this country.

Despite improvements over recent years, there are still parts of the country where it's not available. We have been working on this issue for years and the hope is that the progress we've seen in some areas will happen everywhere. But this is not just a UK issue, the same problem occurs throughout Europe, America and the rest of the world.

While there have been many studies and scientific articles discussing WBMRI, the one voice that has been absent from the discussion with scientists and policy-makers has been the patient voice. We have decided that it's time to change that.

We are now working on a project with the Li-Fraumeni Syndrome Association to run a global survey of people with LFS - we want to find out who has access and who hasn't, we want to know how you view this, and what the impact is of missing screening to quality of life.

The project is in progress - and represents the first of what we hope are many collaborations between the George Pantziarka TP53 Trust and other LFS organisations across the world.

We're in full planning mode for LFS UK 2026 - we'll once again be gathering at International Student House in London, this time on Saturday 12 September 2026.

As if the opportunity to meet others living with LFS and learn from clinicians working on LFS wasn't enough, we'll also be laying on a complimentary lunch and encouraging all guests to join us in the bar afterwards.

Tickets are free and will be available from May - in the meantime here's a sneak peek of our speaker lineup:

Sky Dive?

Sisters Aislin and Olivia Price are raising money for the Trust with a skydive planned for Saturday 11 July 2026.

They've already raised an incredible £2,935 , but there's still time to donate! Use the button below to learn more and donate if you can.

Learn more

ESMO Conference

Our chairman, Pan Pantziarka, attended the ESMO Sarcoma and Rare Cancers conference in Lugano, Switzerland in March.

The conference, one of the most important for the global sarcoma community, covered the latest research and clinical trials in sarcomas - cancers which are incredibly common in people with Li Fraumeni Syndrome. It was also a chance to present the Trust and the work that we do, and to discuss the importance of patient advocacy in research.

TRaising the profile of cancer predisposition syndromes, like LFS, is important so that oncologists and researchers understand why it's important to test cancer patients for germline TP53 variant. It's also an on-going task to produce treatment guidelines so that LFS patients with cancer get treatments that take account of their LFS diagnosis.

Meet the Trustees

In this section we'll get to know a member of our team a little better - this time we're speaking to Dr Sarah Blagden.

How did you get involved at the Trust?

Eight years ago I started having radical thoughts about shifting my career from treating cancer to preventing it. I met Pan around that time and he invited me to meet members of the community - I was shocked and heartbroken to hear their experiences of losing children and partners to cancer, their difficulties in getting regular scans, and the complete lack of prevention options available to them. It sounds dramatic to say that I became committed to the cause that day, but I did!

What does your role at the Trust entail?

I represent Oxford University in a collaboration with the Trust. I actually think this collaboration is an exemplar of how researchers and the general public should interact. The Trust sense-check our ideas, help us get projects funded and solve day to day problems. In return, we help lobby for improvements in LFS surveillance and care, raise awareness of LFS, design and test ways to prevent cancer and host meetings to disseminate information across the LFS community. It feels very reciprocal.

What do you enjoy most about working with the Trust?

I enjoy the relationships I have built over the years with Pan and his team. I have total trust and respect in the Trust’s opinions and I find the September meetings vital for getting feedback on our work and sharing new research ideas. There is a determination and energy in the Trust that I admire and try and reflect back to my research team.

What is your greatest accomplishment?

I hope to look back on my career knowing that I led research into developing tests, treatments and vaccines that turned the dial on cancer, from being perceived as an aggressive and unpredictable disease into something that we see as predictable and preventable. But as my mother says “The proof of the pudding is in the eating” - it will take another decade to wait for the results and know if this was successful. On a personal level, having two teenage children who still speak to me (with only the occasional eye-roll) is a major achievement.

What do you do in your spare time?

I love hanging out with my family and friends, cooking and – strangely - doing domestic things like ironing which give me immediate gratification. I garden (badly) and dream of taking up hobbies like oil painting that I’m too lazy to start.

What are you reading at the moment?

I’m a layered reader (I just made that term up) so will have a few fictional and non-fiction works on the go at once. I am currently reading a lot of Kate Atkinson crime novels because my husband gave me seven for Christmas! I’m also reading ‘Emperor of AI’ by Karen Hao, ‘The Criminal Mind’ by Duncan Harding and have just finished ‘Yellowface’ by Rebecca F. Kuang. All highly recommended.