LFS UK 2025On Saturday 13 September we held our annual conference - it was a great day, but if you weren't able to attend, we've got you covered with a summary of how the day unfolded. We kicked off with the brilliant Abbi Butler, who shared her experience of living with LFS. Pan Pantziarka, our Trust Chairman, then introduced three exciting new databases the Trust is now running. Daniel McAleese from Oxford University gave us a tour of the brand new MyTP53 Project. Remember to email cancer@medsci.ox.ac.uk if you'd like to get involved. Then Emma Woodward from Manchester University took us through radiotherapy and cancer screening from an LFS point of view. We also heard from Victor, who gave us a fresh perspective on life with LFS in Brazil. Sarah Blagden (Oxford University) shared the latest on the MILI Trial and whole-body MRI. Raheleh Rahbari (Sanger Institute, Cambridge University) gave an exciting update on the LiFTS Trial. We rounded off the day with the amazing Katie Marston, whose story of living with LFS was the perfect way to close. All the presentations from the day will be up on our website by the end of the month, so keep your eyes peeled for those, as well the date for next year's conference!
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New Info PackWe're happy to announce that work on a new info pack to be provided to families newly diagnosed with LFS has been completed. The info packs will now be sent round to genetic centres, but are available to all! If you'd like to receive one, please email Trust Vice-Chair Irene Pantziarka on irene.pantziarka@tp53.org.uk.
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Sparkle in the ParkOn 4 October, Molly and Katie McQueen hosted the second Sparkle in the Park charity ball event! Raising money for our Trust and the Teenage Cancer Trust, the event was a great success, so a big thank you to Molly and Katie. Donations are still open if you're interested.
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The FOSTER ConferenceThe fourth conference of the FOSTER (Fight Osteosarcoma through European Research) consortium took place in Warsaw on 25/26th of September. Our chairman, Pan Pantziarka, who sits on the executive committee of FOSTER, attended the meeting - taking the chance to update the delegates on the progress of the MILI trial in the UK, and to discuss further research on LFS and osteosarcoma. The presentation on MILI prompted huge levels of interest, with lots of questions and an interest from people in other countries wanting to explore the idea in their own countries. FA major part of the conference was spent discussing the forthcoming maintenance trial in osteosarcoma - a much needed trial to test whether using a drug called cabozantinib after standard treatment for osteosarcoma could improve survival in this disease which affects so many people with LFS. |
Meet the Team |
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In this section we'll get to know a member of our team a little better - this time we're speaking to Trust Ambassador Aimee Cole-Fallon.
How did you get involved at the Trust? The only help I got after my diagnosis was a leaflet from the Trust that had been put in with the letter from my genetics team. That was my lifeline and the only “next step” I had. Thinking of all the others who might be in that position, I knew I had to help. What does your role at the Trust entail? Usually just talking to people, sharing experiences, information and encouragement. What do you enjoy most about working with the Trust? I love that despite a horrible predisposition, everyone has these wonderful personalities. Some are vibrant, some reflective, some wise, but I feel like I learn so much from everyone. What is your greatest accomplishment? I used to say my career, but after I had my mastectomy to be there for my future kids, along with all the IVF I did - I now say having a happy daughter. What do you do in your spare time? Spare time? Ahh I remember those days. My spare time is now usually fetching snacks for the one year old sergeant major in my house or letting her cover me in stickers. What are you reading at the moment? Sunrise on the Reaping. |
Meet up in LondonOn Saturday 29 November there will be a lunch meet up in London - anyone and everyone is welcome to join! Keep an eye on our social media for more information and reply to this email if you'd like to come along. |
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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