Newsletter #4


Newsletter #4

George Pantziarka TP53 Trust - Newsletter

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We wish all of our friends, families and supporters a very Happy New Year!

Liquid Biopsies

Early cancer detection is the primary aim in the management of Li Fraumeni Syndrome - early detection is key to successful cancer treatment.

Currently the main mechanisms for this early detection are regular surveillance using whole-body MRI (WBMRI), physical checkups and so on.

However, access to WBMRI is problematic for many LFS patients, and of course it can only pick up cancers once they reach a certain size – too small and they don’t show up in the scanned images.

An alternative mechanism that is being intensely researched is the use of liquid biopsy.

The idea here is to pick up cancer-associated chemical signals from blood samples. Not only is this easier and more convenient than having to undergo WBMRI, but there is also the potential to pick up cancers before they are big enough to show up on a scan. That's the theory, and currently there are two studies on-going in the UK looking at this for LFS - the ICED study at the Royal Marsden and ATLAS in Manchester.

A new paper, published in the journal Cancer Discovery, reports on the first results of a liquid biopsy in LFS study from Toronto.

While the idea of liquid biopsy is simple enough, in practice this is a really difficult thing to do - especially in LFS. If you are looking for one type of cancer things are a bit more straightforward, you can look for chemical signals just for that one cancer type.

But people with LFS can develop all kinds of cancers - there is not just one possible signal, there are many. There are risks of false positives - picking up non-cancer signals and saying they are cancer, and false negatives - giving someone the all-clear when there is actually a cancer present. The authors try and address these issues by using a combination of three different techniques rather than relying only on one.

This article on liquid biopsies continues on our website - continue reading it by clicking the link below.

LiNCR Conference

Next year we are planning to hold our first Li Fraumeni Network of Clinicians and Researchers (LiNCR) conference at the University of Oxford in May or June.

It will be a great opportunity for researchers and clinicains to see what others are up to, share best practices and research results and to discuss future collaborations.

This will be a more technical conference than LFS UK 2024, which will remain community-focused, though of course we hope that researchers and professionals will attend both.

LFS UK 2024

Saturday 14th September 2024. Save the date!

Next year we will be changing venue. LFS UK 2024 will be held at ISH (International Student House), Great Portland St. London.

It's a great venue, near to several underground and overground stations and directly opposite London's brilliant Regent's Park, for anyone who fancies a stroll.

The rooms are bright with natural light, and the catering looks good, plus there is a bar for those of us who'd like to hang around for a drink and a chat afterwards.

Click here to check it out.

Watch this space in April's issue for news of speakers and tickets. Don't miss this one - it's going to be good!

And don't forget you can access all the presentations from LFS UK 2023 via our website by clicking here.

What's new with us?

Our website will soon be getting a revamp! With help from Matt Russell, a friend of the Trust, we'll be refreshing the way the site looks as well as the content we keep on there. Anything you'd like to see? Let us know by replying to this newsletter email.

The MILI Trial is open! The trial will test whether the anti-diabetic drug metformin can reduce cancer incidence in people with LFS. The trial will start recruiting eligible patients in Oxford, with other centres across the country opening throughout 2024. For more info take a look at our Projects Page here.

in December, Trustee Steph Phillips attended the Oxford Centre for Early Cancer Detection Symposium on behalf of the Trust. Steph presented 'Researcher-PPI Buddy Scheme: integrating patient and public involvement into basic research and clinical trials'. Well done Steph!

Patient Stories

Would you be interested in telling your story?

We would like to extend our Voices of LFS (that we include in our conference programme each year), and put the stories of individuals with LFS - or members of families with LFS - on our website.

Our press volunteer, Louis Pantziarka already has an article about being a sibling of someone with LFS (read it here) and we'd love you to contribute too.

If you're interested, reply to this email or message us on social media.

Meet the Trustees

In this section we'll get to know one of our trustees a little better - this time we're speaking to Natasha Bramble.

How did you get involved at the Trust?

I have been friends with Irene and Pan for a long time since my youngest son Max became friends with Louis at the local Infants School. They are both 25 now! After George passed away and they were starting to think about setting up the Trust they asked me whether I'd like to be involved and obviously I was more than happy to help

What does your role at the Trust entail?

I act as Finance Officer for the Trust which basically means I ensure compliance with Charities Commission legislation from a financial perspective, prepare annual accounts and monitor income and expenditure as required.

What do you enjoy most about working with the Trust?

This will probably sound very selfish when everyone else will say something about helping people, but I love trying to understand the science behind all the research we are involved with. I listen to the speakers at our annual conference in absolute awe at their knowledge and the way they apply that knowledge to bridge gaps in our understanding of LFS and mutations of the TP53 gene. Their enthusiasm is boundless and I feel very privileged to hear the latest developments in their work.

What is your greatest accomplishment?

I feel that my accomplishments are insignificant in the grand scheme of things but about five years ago I started running. I joined a running club and completed their couch to 5k sessions and have been an avid runner ever since. After my husband died from bowel cancer in 2013, I wanted to do something to make my children proud of me and running was something very much outside of my comfort zone. I hated cross country at school and was more likely to be found hiding in the bushes smoking! When I need motivation to go out, I remind myself that I can and that their lovely father doesn't have that choice and so I run for Ian.

What do you do in your spare time?

I volunteer as the treasurer for Surbiton Farmers' Market, for a small local start up business and provide an independent review service for an investment club, as well as the Trust. I do a yoga class every other day and walk in Richmond Park every week too. I have three adult children and our family WhatsApp group can take over at times. I also have two golden retrievers so I'm out walking them most days too. Reading that it's no wonder I never find time to hoover or tidy the house!

What are you reading at the moment?

I'm reading Slaughterhouse-Five by Kurt Vonnegut. I've had it in my Audible library for several years and have finally found some time to listen while I walk my dogs. I'm about half way though. I gave it to my godson some years ago and am now worried that it was wholly inappropriate and can't quite remember if he was 14 or 18 at the time. I vaguely recall that he liked it but I do hope that wasn't because he was shocked! Sorry Gill 🙂

LFS Awareness Day

As ever, the Trust will be supporting Living LFS with LFS Awareness Day on 20th March.

Our trustees and volunteers will wear blue for LFS, doing our bit to spread awareness around our communities via social media.

We encourage you to do the same!

The trust survives thanks to your ongoing support - we couldn't do it without you.

Feedback on this newsletter? Email or message us on social media:

George Pantziarka TP53 Trust
Registered Charity Number 1157167

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