What's new with us?

There will be an informal lunch meet-up in London on Friday 13 November for anyone who'd like to join us. Watch out for details on our social media, or reply to this email and we'll reach out to you.

We've also been working with cancer geneticists and oncologists on the next set of European guidelines for the management of people with Li Fraumeni Syndrome. Watch this space!

Friends of LFS

In this section we'll get to know one of our supporters a little better - this time we're speaking to Dr Emma Woodward

How did you get involved at the Trust?

I first became involved almost by chance! Professor Gareth Evans was speaking at the annual meeting and I went along to listen. I found it incredibly enlightening to hear directly from patients and families about their experiences and I could see how much they valued the opportunity to meet others in similar circumstances, share experiences and learn from one another. It really brought home to me the importance of the Trust and the support it provides, and I've been involved in various ways ever since.

What does your role at the Trust entail?

My involvement with the Trust is fairly informal and varied. I help with questions that come through from patients and families, whether that's pointing someone towards the right specialist clinic, helping them navigate care pathways or discussing aspects of their condition. I also share updates on research developments and findings and enjoy discussing research ideas with the Trust and its members. Sometimes it's simply about being a listening ear

What do you enjoy most about working with the Trust?

What I value most is the opportunity to spend time with patients and families, to listen to their experiences and learn from them. Living alongside a high cancer risk brings many challenges, and it's important to understand what really matters to patients and their families. Working with the Trust is an opportunity to give something back, and to work together to bring the best of international science and research to bear on the questions and challenges that matter most to families.

What is your greatest accomplishment?

I'm not sure I have a greatest achievement! I've always enjoyed bringing people together, patients, families, clinicians and researchers from different disciplines and countries, to share ideas, experiences and develop new approaches. For rare conditions like LFS, these collaborations are especially important, both for sharing clinical experience and expertise, and for developing research together that addresses the questions that matter most to patients and families. I'm particularly proud of the networks and collaborations we've built, and what we can achieve by working together.

What do you do in your spare time?

I love spending time outdoors, particularly anything involving water! My favourite activities are swimming in the sea or in an outdoor pool, even in the North West we have outdoor pools to enjoy in the summer. My aunt, now 95, taught me to swim in the sea at Leigh-on-Sea in Essex, and that love of sea swimming has stayed with me ever since. When I'm back in Northern Ireland, I really enjoy sailing with my dad. This summer I also joined a local rowing club in South Manchester and am thoroughly enjoying the concentration that rowing requires. In fact, it was one of our LFS patients who encouraged me to keep up with the rowing, and I've taken that advice to heart! There's definitely a theme here, anything involving water seems to be my way of switching off and relaxing.

What are you reading at the moment?

I tend to read for relaxation and escapism, so I enjoy books with engaging characters and a good story, but which also have something to say. I am particularly enjoying The Last List of Mabel Beaumont by Laura Pearson. It's about an elderly woman who, following the death of her husband, unexpectedly develops a whole new circle of friends and begins to rediscover herself. It's a lovely mixture of humour, sadness and warmth. What I particularly enjoy are the characters and their relationships, and the idea that life can still bring unexpected friendships, adventures and happiness, whatever your age.