LFS UK 2024
Our eighth annual national conference, was held this year on Saturday September 14th at ISH (International Student House) in central London. Responses so far have been really positive, and we are pleased to say that the new venue, in a great central spot for transport, was fantastic and went down extremely well. Attendance was good, with people from all over the UK and from Sweden and Switzerland too. As with previous years, it provided lots of opportunity to socialise, to network and for people to ask questions and chat to clinicians. There were updates on the MILI trial from Miriam Dixon-Zegeye and on the LIFTS project from Raheleh Rahbari and Joe Christopher, and results from the Signified study from Lydia Taylor. We also heard from Mette Jorgenson at Great Ormond Street Hospital’s LFS children’s clinic, and Emma Woodward from Manchester University filled us in about their work on liquid biopsy. Our own Pan Pantziarka introduced people to the Anticancer Fund’s My Cancer Navigator service, which has proved invaluable to those who have used it. We heard about Aimee Teresa’s experience of IVF – and met the result in the form of a lively young Iris! Our ambassador Chris Stevens gave his view of our first LiNCR (Li Fraumeni network for clinicians and researchers) conference held in May of this year. It was definitely an interesting and informative day. If you missed it, slide presentations will appear on our website. They should all be there by the end of the month. And LFS UK 2025? SAVE THE DATE; SATURDAY 13TH SEPTEMBER 2025. Don’t miss it because it’s going to be good! 
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The FOSTER ConsortiumThe Fight Osteosarcoma Through European Research (FOSTER) Consortium held it's annual conference in Paris on September 25-26th. Trust chairman Pan Pantziarka took part, representing parents and patients. One of the FOSTER work packages (WP9) is dedicated to cancer predisposition syndromes, of which Li Fraumeni Syndrome is one of the most common in osteosarcoma. Pan, who is co-leading WP9, reported to the conference on the MILI trial, as well as working with members of WP9 to map out a program of work related to LFS - for example, looking at whether LFS patients with osteosarcoma should have different treatment options. Overall the meeting was very positive, and it shows that oncologists and other clinicians are increasingly aware of LFS and the challenges it presents. |
Randomisation in MILIThere's a brand new article on randomisation in the MILI Trial available now on our website. The MILI trial is designed to test whether metformin, a drug that treats type II diabetes, can reduce the risk of cancer in people with LFS. The piece explains what randomisation is, why it's important and how everyone involved in MILI can benefit, regardless of which arm they end up on. |
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Meet the Trustees |
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In this section we'll get to know one of our trustees a little better - this time we're speaking to Patricia Walsh.
How did you get involved at the Trust? Having had breast cancer and been found to carry Li-Fraumeni mutations, I wanted to find out more and find others facing this diagnosis. I wanted to gain knowledge and support for myself and to share with others. I have lost three grandparents, two aunts, my mother, a cousin, and my only sibling to cancer. I am the first in my family to survive a cancer diagnosis for more than two years; in fact it is 15 years and counting. I found the people leading the Trust to be welcoming, warm and caring as well as a great source of information. What does your role at the Trust entail? I am an “Ambassador” which means I make myself available in any way that I can to support the LFS community. In one sense I am one of the people who has been there and done it, having lived experience which may be of some use to others. I am happy to communicate directly or in writing with anyone who wants to chat about LFS, especially what it means to them or their family. I would also be content to just be a listening ear to anyone affected. What do you enjoy most about working with the Trust? Working with such dedicated, caring people. I have been very impressed by the professionals that the Trust have liaised with - they're always happy to share their knowledge and expertise. It has been thrilling to witness the progress in understanding cancer over the last ten years, as well as the increasing attention paid to TP53 mutations and LFS carriers. I also look forward to seeing the usual friendly faces at the annual conference as well as getting to know new people. What is your greatest accomplishment? I feel I have two. Firstly, when I was able to help people in my profession as a Speech Therapist and secondly, as an adoptive parent bringing up our son and daughter. What do you do in your spare time? I like developing and looking after my garden when the weather allows it. I love cats and our latest two are only one year old now so I spend (some would say waste) a lot of time playing with them. I’m working on training them to walk with me on a harness and lead, which is going well so far, although they take me for a walk more than me controlling the direction at present! What are you reading at the moment? ‘The Body Keeps The Score’ by Bessel van der Kolk. |
For The Love of George
If you'd like to learn more about the story behind the George Pantziarka TP53 Trust, you can purchase the For the Love of George on Amazon - currently on special offer! For the Love of George tells the story of George's life and sets the scene for the creation of the Trust. Just click the link below to view it on Amazon. All proceeds from sales will go to the George Pantziarka TP53 Trust. |
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The trust survives thanks to your ongoing support - we couldn't do it without you.Feedback on this newsletter? Email press@tp53.org.uk or message us on social media:
George Pantziarka TP53 Trust |
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