News and events

11/04/20

"Meet the Experts" Evening at UCL Cancer Institute

“Meet the Experts” evening organised by Chordoma UK

@ UCL Cancer Institute

Meet the Experts on Chordoma

On the 24^th January, Chordoma UK organised a special event for patients with chordoma and members of their family or a friend to meet with clinicians and scientists.   This is the first time that Chordoma UK has hosted such an event.  The aim of the evening was for patients to hear what expert clinicians in the field of chordoma have to say about the disease; the challenges of treating the disease but also what is new in terms of treatment, clinical trials and research.  We hoped that the event would provide the opportunity for people to learn more about the disease in a relaxed environment; to have the opportunity to ask questions and hear how others with the same disease are getting on. This is not always possible when attending a clinic appointment but with a few nibbles and a drink in hand people unwind and start to chat.

We did not know what to expect – if any would come, so we were delighted that there was a full house.

The presentations covered a background to the disease and the research being undertaken, which is generously funded by Chordoma UK, by Professor Flanagan, who was first to present and spoke about the current research done on chordoma and her discovery of brachyury and how the research led to the afatinib clinical trial.

Mr Craig Gerrand spoke about the surgical approaches to sacral chordomas.

Dr Sandra Strauss updated us on the anti-EGFR (afatinib) clinical trial.

Professor David Choi spoke about modern techniques and the use of robotics for undertaking base of the skull surgery. Dr Beatrice Seddon spoke about radiotherapy and proton beam treatment.

Sylvie Leslie, diagnosed with chordoma 3 years ago, gave a heartfelt talk about her experience. Optimistic and positive about the future, Sylvie has come up with the fantastic idea of promoting the National Chordoma Day and organising walks simultaneously across the UK – we will all be ‘Walking Towards a Cure’!

The charity event ‘walking towards a cure’ is planned for Sunday 19^th September 2021, so keep the date free and join us!! The date is chosen in memory of Susan Fitz-Gibbon who would be celebrating her birthday but is no longer with us. The aim is to generate greater awareness about chordoma, to come together and celebrate our lives, to have fun and to raise funds for research. If you want to organise or help organise a walking event in your area, let us know and we can help you, just get in touch with Sylvie; sylvievoicee@yahoo.com.

Seeing the “Science in Action”

Another aspect of the evening was showing guests what research is being undertaken and a chance to tour the laboratories where real chordoma research takes place. Chordoma cells could be seen growing under a microscope and experiments of drugs are tested against these chordoma cells.

The clinicians and scientists who joined the event thoroughly enjoyed the evening and would be excited to hold another event.

One research scientist commented that it was nice to hear back from the public how their research benefitted them.

WHAT PEOPLE HAD TO SAY

Here are some of the things that people have said that was the best part of the evening for them.

 “Hearing Professor Flanagan talk and meeting a whole room of people affected by chordoma when 18 months ago we had never heard of it was amazing”

“I was diagnosed with chordoma 5 years ago, but I learnt more at this short meeting about my disease than I did over the last five years since I received my diagnosis”

“Just knowing there is a community of experts working on tackling chordoma was encouraging,”

“Everything, especially I am very grateful for this opportunity and also for the kindness of everyone,”

We want to hear your feedback. Please let us know if there is anything you would like covered in the next event.

LET US KNOW IF WE CAN MAKE IT BETTER NEXT TIME!!

A big THANK YOU to the Attendees and Researchers to the staff at UCL and The Royal National Orthopaedic Hospital

-       Dr William Cross – Bioinformatician at UCL Cancer Institute in Sarcoma Genomics

-       Dr Solange De Noon – Clinical Research Fellow specialising in pathology

-       Joanna Hindley – Research Staff at the Royal National Orthopaedic Hospital

-       Lily Hoa – Project Manager

-       Courtyard Café Catering staff