Newsletter #3

Newsletter - George Pantziarka TP53 Trust

Charity Ball!

Molly McQueen, with her mum Katie, organised a spectacular charity ball in Kilmarnock, Scotland to support the Trust and another cancer charity.

It was a great opportunity to spread the word on LFS and to raise money for a good cause. Judging from the photos it was a great night for all. Molly had this to say:

"Hosting a charity ball has always been something myself and my mum have wanted to do since both being diagnosed with Li-Fraumeni Syndrome a few years back, and me being diagnosed with my first childhood cancer.

"My mum is 42 and has had 3 cancers in her lifetime as well. When we began looking into our genetic condition we realised there was little information and support out there available!

"The George Pantziarka TP53 trust was the only charity in the whole of the UK we could find for information, support and a sense of community - to feel like we weren’t so isolated!

"Our aim for our fundraising ball was to raise a lot of awareness, and to raise funds to enable others with the same diagnosis to get the best information, support and help we can.

"We are delighted to be able to donate £10,000 to the Trust, as well as a further £6,000 to our other chosen charity, as our overall aim for the night was £10,000 collectively!"

What's new with us?

Our Vice-Chair, Irene Pantziarka, has written a new article for our website - Ten Years and Counting; looking back, and looking forward. The article reflects on where things were at in 2012, what's changed ten years on and what we hope to achieve in the next ten years. Give it a read here.

We're organising an informal lunch meet-up in London on Saturday 25th November and we'd love to see you there! Reply to this newsletter or message us on social media if you're interested.

We are pleased to announce that the MILI trial is now fully approved! See below for more details.

LFS UK 2023

Our annual conference, LFS UK 2023, successfully took place on a sweltering hot September 9th, at the Conway Hall in central London.

Despite transport problems and the heat, the turnout was really good and the audience got to hear and interact with a range of LFS experts and researchers.

We had updates from the MILI trial from Sarah Blagden, Joe Christopher gave us some exciting preliminary data from the LiFTS project, Elena Cojacaru updated us on SIGNIFIED and ICED, Madeleine Adams talked about incidental findings from whole-body MRIs and Emma Woodward outlined LFS services and research projects in the North of England.

In addition we had two great talks from our Voices of LFS - Patricia Walsh and Nina Irwin. Last but not least, Oxford University PhD student Hannah Fuchs presented a poster about her work on p53 auto-antibodies.

Alongside the formal presentations, the conference is always a fantastic social event - we had people with LFS from all over the country. Some were old friends, but also some attending for the first time. It was great to see so much interaction and networking going on.

Aside from the presenters, we also had clinicians and researchers in the audience - answering questions, explaining things outside of a clinical context - and asking questions too - it's definitely a two-way street!

If you weren't able to make it, you can still get a flavour of the day via our website. Some of the presentations have already been uploaded (see those by clicking here), while some are still to come, so keep your eyes peeled.

As for us - we're already planning next year's event!

Meet the Trustees

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

How did you get involved at the Trust?

I first contacted the trust in 2020 after my daughters were diagnosed with LFS and I was trying to access surveillance scans. Pan was literally a lifeline for me. I stayed in touch and attended the conference for the first time in 2022. In December 2022 I was delighted to accept the invitation to become a Trustee.

What does your role at the Trust entail?

My role really involves advocacy and raising awareness of LFS. I’m a public and patient representative for the All Wales Paediatric Cancer Predisposition Team and also work closely with the OCTO team at Oxford as a PPI supporting innovations such as the MILI trial. The greater our network, the more people who understand LFS, the better our opportunity to access much needed clinical trials and improve standard of care.

What do you enjoy most about working with the Trust?

It really is an extended family. I love the dedication, the tireless commitment and

the genuine care. I’m proud to be a part of it, to continue to build the legacy and to have the opportunity to make a difference.

What is your greatest accomplishment?

That’s a tough one! Right now, it’s having two amazing children who are thriving, succeeding and most importantly happy, despite all they have had to deal with over the last few years. It’s hugely important to me that they can live with LFS and that doesn’t limit their ambitions and dreams.

What do you do in your spare time?

I have a busy job as a HR Director and being a single parent there’s not much spare time! But I do try to exercise, for my mental health as much as anything, and also we head to the beach as often as we can. It’s my therapy.

What are you reading at the moment?

I’m reading Colleen Hoover at the moment. It helps clear my head of to do lists before bed.

Update on MILI

We are pleased to announce that the MILI trial has finally cleared all the regulatory hurdles and is fully approved!

The first centres to open the study will be Oxford and Nottingham - with the first patients expected to join the trial within the next four weeks.

Once those two centres are open the rest will follow suit - hopefully by the end of the month patients across the country will finally be able to join this ground-breaking clinical trial that we've all been waiting for.

As always, you can find more details on MILI on the Projects section of our website, or by clicking here.