The Year in Review – 2021

It has been another busy year for Ed’s Foundation during which we have taken some very positive steps forward.

We have increased the number of Trustees from 4 to 7 and now have the additional support of Katie Hamilton, Dr Amarnath Marthi and Callum Atkins who join Matt Fraser and Chris Paluch. We are very grateful for their time and support.

Fund raising has continued and with the help of so many generous donations we passed our initial target of £500,000 in October and have now reset this to raise £1,000,000. We would like to thank everyone who has kindly contributed to the Foundation and we welcome any ideas, no matter how wacky, to raise further funds in 2022 in order to help us make the difference that Ed would have made had he lived longer.

The Foundation is now in a four-year partnership with University College London to support pioneering research into Clear Cell Sarcoma that started in November. The programme, known as the Edward Showler Foundation Clear Cell Sarcoma Research Programme will be led by Dr Nischalan Pillay and supported by Dr Sandra Strauss and will employ the latest genome-sequencing technologies to discover the genetic mechanisms that cause Clear Cell Sarcoma to develop and grow. Through the work it is hoped to gain a comprehensive understanding of the genomic causes and drivers of the disease and to improve knowledge of the disease’s progression and of it’s resistance to conventional treatments. The findings will then be applied to clinical trials with the aim of identifying new and effective treatments.

Nischalan will also be collaborating with the team in Oxford working on the Human Cell Atlas. This may include a small sample of sarcoma cells but more importantly will provide a benchmark for what “normal” cells look like so as to better compare with abnormal or cancerous Clear Cell Sarcoma cells. 

The bulk of samples that will be analysed will come from the Bio Bank at the Royal National Orthopaedic Hospital but links are now being made with other sarcoma centres across the UK to share their samples and we have recently been awarded a grant to collect samples being held at the Birmingham Sarcoma Centre.

The potential of this research could be so powerful for the suffers of Clear Cell Sarcoma in that it could lead to the kind of improvement to treatment and prognosis that we would have loved Ed to have benefited from.

Ed was passionate about doctor patient communication and we have been in discussion with Cambridge University to see how we can progress this aspect of the Foundation’s work. We have agreed, subject to Trustees approval, to offer up to 5 grants a year of £1,000 each, to be awarded to Cambridge University medical students undertaking the SSC communications course. The grant will be to assist in funding their attendance at conferences so that they can present their work and disseminate it to a wider audience. We would see this project running initially for 10-years and commencing in 2022. We see that this as a fitting memory to Ed.

As part of our commitment to fund Memory Days for seriously ill young adults, the Foundation donated a further £5,000 to Willow to help them to provide these special days.

We are also investigating the funding or part funding of PhD, MD or MB-PhD in communication or end of life care at Cambridge University and we hope to take this forward as a project in 2022.

We have been invited by Professor Patrick Schöffski to attend the FORTRESS meeting to be held in Leuven next February. FORTRESS is an international meeting, mainly attended by clinicians and researchers that is a forum for discussing the latest developers in sarcoma research and Nischalan has agreed to present a paper on our programme. 

On Saturday the 5th March 2022 we have arranged a screening of Back to the Future II at The Garden Cinema in Covent Garden (39-41 Parker Street, London, WC2B 5PQ) to remember what would have been Ed’s 33rd birthday. We have kindly been allowed use of the whole cinema and bar for this private viewing at this recently renovated art house cinema. Please come and join us! Refreshments will be provided. Meet up with your friends and have a great afternoon. Save the day and we look forward to seeing you!

With much Love,

John and Ellie
December 2021