Ultra Marathon Runners
As we kick off this quarter’s newsletter, there’s really only one place we can start.
Everyone at the George Pantziarka TP53 Trust would like to send our congratulations and thanks to Sam McKavanagh, Joel Brisk and Simon Davies – the three friends who this month raised over £14,000, split between Young Lives vs Cancer and our Trust.
Sam, Joel and Simon ran the 100km ‘Race to the Stones’ ultramarathon from Lewknor to Avebury to raise money for the charities that have supported Sam’s son, Milo.
Milo was diagnosed with an adrenocortical carcinoma just before his first birthday. During the course of his treatment, both Milo and his mother Maria, were diagnosed with Li Fraumeni Syndrome. After eight rounds of chemotherapy and two surgeries, Milo’s latest scans and blood tests have come back clear.
As a Trust we’re proud to have supported the family through this time and are continuing to provide information on appropriate screening protocols and upcoming clinical trials.
The three friends completed the ultramarathon on 8th and 9th July and, at the time of writing, have raised £14,380, an incredible 148% of their fundraising target. Donations are still open, so if you’d like to give to a worthwhile cause, or read more on Sam, Maria and Milo’s journey, click the link below.
What's new with us?
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We’re delighted to confirm that the eighth annual UK LFS Event will take place on Saturday 9th September this year. Take an exclusive sneak peek at this year’s programme below, and don’t forget to book your tickets!
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 Elizabeth Sam.
How did you get involved at the Trust?
I found out I had LFS in 2015. A family member living in Singapore was diagnosed and it was suggested I be tested – since then I’ve been in contact with Pan (Chairman & Co-Founder). I began volunteering at the Trust first, before becoming a trustee in 2017. I accepted the role as it is a great way for me to contribute to the Trust and involve myself in the LFS community.
What does your role at the Trust entail?
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Update on MILI
The MILI trial is ready to start but it remains in the backlog of clinical trials waiting for approval from the MHRA – the Medicines and Healthcare products Regulatory Agency.
This is a problem not specific to MILI and is sadly affecting many clinical trials that patients are desperate to join.
As soon as the trial opens we will be informing absolutely everyone that it is ready to go!
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:
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