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.
We've published our strategic plan for 2023 - 2025 - find out what we're planning to focus on in the next couple of years by clicking here.
We introduce LINCR - Li Fraumeni Network of Clinicians and Researchers (pronounced 'linker') - our new network for health professionals and researchers working on LFS. Click here to check it out.
As sarcomas are 'core' cancers for LFS families we have joined SPAGN - the Sarcoma Patient Advocacy Global Network to represent all families with predispositions to sarcoma. Click here to take a look.
In June our trustees and three ambassadors met as a group for the first time in central London, thanks to support from our friends at Bamboo Loans. The team discussed the future of the Trust and the roles our new ambassadors will have in upcoming projects. Looks like they had a great time!
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 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?
I help with the social media and the social activities that we organise. While some other trustees have LFS in the family, I am the only trustee who has LFS myself, so I can provide insight as someone who is personally directly impacted by the decisions we make.
What do you enjoy most about working with the Trust?
Meeting other members of the LFS community. Being part of an
organisation that helps to support that community is my favourite part of being a trustee. Having LFS can be isolating so I'm happy that we make a positive impact.
What is your greatest accomplishment?
Ask me again when I've qualified as a solicitor!
What do you do in your spare time?
Anything active! People are surprised when I tell them that I play Flag American Football in a mixed team.
What are you reading at the moment?
Unfortunately the only reading I do is my legal textbooks. I sit 16 exams in August.
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.