Newsletter #6

The LiNCR Conference

The first LiNCR (Li Fraumeni Network for Clinicians and Researchers) conference was held at Oxford University on May 23rd.

This meeting brought together health care professionals, researchers, students and people with LFS for a one-day conference looking at the latest developments in the field.

The conference was pitched at the professionals rather than being a community event, unlike our September conference. There was a full program of speakers and presentations, with room for discussion and networking throughout the day.

A huge thank you to the team at Oxford University who helped ensure a positive day was had. Feedback has been positive and we are already thinking about possibly following up again in 2025.

Meet the Trustees

In this section we'll get to know one of our trustees a little better - this time we're speaking to Pan Pantziarka.

How did you get involved at the Trust?

George was diagnosed with LFS only after developing his third cancer - the osteosarcoma that killed him in 2011. At the time there was nothing out there for people with LFS, no easily accessible information, no support groups or online communities. After Georgie died we wanted to do something in his name - something positive. We don't want people to go through what Georgie did and what our family went through.

What does your role at the Trust entail?

As chairman I help set the direction of the Trust, working with the trustees and our supporters. I'm pretty involved in most aspects of our work - from chatting to people via Facebook, to answering emails, to organising the annual conference. But it's a team effort - the Trust couldn't function if it was down to just one person!

What do you enjoy most about working with the Trust?

I enjoy interacting with people - not just people with LFS but also the many researchers and health professionals working in this area. There are some fantastic people in our community - and although that's a word that gets overused all the time, I think community is exactly what it is. And we're doing our best to make it stronger all the time.

What is your greatest accomplishment?

At one time I would have said publishing papers in medical journals given I don't have a medical or biological background. But now I think the Trust itself is one of my greatest accomplishments - especially since we've been instrumental in getting the MILI trial off the ground. Not all down to me of course!

What do you do in your spare time?

I love reading, listening to music, walking and coding. I love programming still, even though I don't get much chance to do it these days. There's something intensely satisfying about it, especially when you solve a hard problem in a non-obvious way. I hope we never get to a state where AI replaces software developers!

What are you reading at the moment?

Just starting 'Stalin's War' by Sean McMeekin. Waiting to read Anthony Beevor's book on the Russian civil war after that. I'm really into history and politics, though I also read a lot of other subjects. I've also recently been rereading stuff I read when I was a teenager and really enjoyed it - 1984, a lot of old science fiction, and I'm planning on rereading Catch 22 again. Coming back to these books I think I appreciate them in a different way.