Newsletter #3

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!”

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!

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.

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

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