Towards the end of July is when your marathon training should restart

Welcome to the summer edition of Connect

Richard Davidson Chief Executive

So much has happened since the last issue of Connect as all of our lives have been affected by the outbreak of COVID-19. Many of this summer's fundraising events have been cancelled or postponed. While we're still hopeful these events will go ahead later, this isn't good news for everyone who has been training hard. It isn't good news for charities like Sarcoma UK either, which will see a drop in the donations and income from these events. It's really bad news for the people who depend on our support. Our Support Line staff have been working tirelessly to help those in need, with the number of the team doubled since early March. The demand for our services is at an all-time high and the cancellation of fundraising events is putting an unprecedented strain on our income. Read (page nine) about the team’s work and how we’ve collaborated with other charities to offer consistent advice and keep our beneficiaries at the heart of what we do. A big thank you to everyone who supported us by

The Virgin London Marathon is one of our very biggest events. While the decision to postpone the race was the right one, we completely understand the disappointment for everyone who has trained so hard for this challenge, and so many others. But our incredible runners are keeping motivated (see page 18) and we will be with them every step of the way. taking the 2.6 challenge. We were so impressed by your creativity and spirit from clocking up the miles and steps to counting wriggly worms! As always, Sarcoma UK is committed to supporting sarcoma research. As you might expect, many clinical researchers will be spending time on patient care and our priority is to support researchers to do the best work they can in the current environment. Our current plan is to continue providing opportunities for researchers to apply for funding as usual this year. Learn more on page six. Finally, why not make the most of the summer with a Great British Picnic anytime until October – in your own space? It’s a simple and fun way to get creative as well as raising funds and awareness for Sarcoma UK. I’m already planning my picnic – please join me and get inspired here sarcoma.org.uk/gbp. Help us keep supporting everyone affected by sarcoma – it has never been more important

Inside this edition:

Our commitment to supporting sarcoma science talent

Sarcoma UK funding for PhD students includes two research projects ultimately hoping to make a difference to sarcoma patients.

Page 4 Tracey on track with her Team BRIT ambitions

A determined grandmother has set her sights on joining a unique racing team, despite having elected to have a leg amputated.

Page 6 Chemotherapy – A patient’s perspective

Andrew Sutton, 39, shares a few practical tips he wishes he had been given when starting chemotherapy after his diagnosis with osteosarcoma.

Page 17

Your greener Connect

Sarcoma UK is committed to looking after the environment. This publication is printed using paper sourced from well-managed sustainable forests and non-toxic ink. All resources are distributed with a minimum amount of shipping and recyclable packaging where possible. Please work with us, care for our environment and recycle this publication responsibly.

Early this year Sarcoma UK welcomed a new Director of Policy and Research, Dr Sorrel Bickley. Sorrel joins the charity from the MS Society where she spent four years as the Head of Biomedical Research.

Before joining the charity sector, Sorrel completed her PhD in Developmental Biology, studying how genes and biological processes shape the way the body forms. “I think you could describe my interest as unravelling how all the complexity of the human body arises from such a simple beginning,” says Sorrel. “But as much as I enjoyed doing lab based work, it was too far away from making a difference to people. I wanted to do something that would help change people’s lives for the better.” Sorrel then spent six years working at the MS Society, leading on research communication and overseeing some major research programmes, including a Tissue Bank and an International Progressive MS Alliance. In late 2019 she was approached about an opportunity with Sarcoma UK, a cause to which she has a very personal connection. “My mum, Fran, died from sarcoma eight years ago, and for a long time I had kept the door on sarcoma shut. She became ill and passed away very quickly, within about a month of first noticing something was wrong. We were told it was a rare form of cancer, which we later found out was spindle cell sarcoma.” Spindle cell sarcoma is a rare type of soft tissue sarcoma that starts in the bone. At the moment, not much is known about this sarcoma sub-type.

A tribute to trustee

Ian Hughes

We were sorry to hear of the death of Ian Hughes, one of our talented trustees, in January.

Ian stepped down from the board of trustees last

November after eight incredible years helping to guide and grow Sarcoma UK. Having experienced sarcoma himself, he was truly committed, determined and inspired to make a difference for everyone affected by sarcoma.

Ian was diagnosed with leiomyosarcoma in 2010 and again with retroperitoneal leiomyosarcoma in 2017.

During this time, he not only excelled as commercial and managing directors for some of the largest food companies in the UK, but joined the charity in its early years, contributing his knowledge and expertise to help develop and encourage the team though a crucial period of dynamic change and development.

“Losing my mum like that was a hard experience to go through. It’s disheartening to see that there have been so few breakthroughs in sarcoma research or significant progress with treatments in the past few years, especially when we’ve seen this in other cancers.” “But there are glimmers on the horizon. I want to bring more ambition and collaboration to our research and policy work, focusing on understanding what matters most to people affected by sarcoma and working with others to achieve a greater impact.” Since starting at Sarcoma UK she’s already seeing sarcoma through a different lens. “The supporters who have hope for the future and are so committed to improving things have really helped me to open up about sarcoma. I’m excited to get stuck in and be a part

of this community.” Ian and Marie sadly lost their son Oscar in 2014 to meduloblastoma, a type of brain cancer. It was after experiencing an outpouring love and support from friends and family that Ian also began to fundraise for Sarcoma UK. Though sponsored bikes rides and team challenges, he channelled his experience following Oscar’s death into raising awareness and funds for everyone affected by sarcoma, in the hope that other families could eventually be spared losing a loved one to cancer. Ian was a kind, generous and thoughtful man who had been ill for some months and in a hospice for the last few weeks. Despite surely knowing that his condition was worsening, he still made time for Sarcoma UK, actively and cheerfully contributing to our work, including Connect. It was very much our honour and our pleasure to work with Ian over the last eight years. We wish his wife Marie, his children and his family the very best.