Elin Rose Appeal

 

Five years ago, our daughter Elin Rose was diagnosed with Ewing's Sarcoma, a rare bone cancer. With incredible positivity, Elin faced seven chemotherapy combinations and surgery to remove part of a bone in her leg. Her cartwheels and smiles amazed us all.

 

However, protocol treatment options were limited. This rare disease has little funding and protocol treatments have not changed in over twenty years. We launched this appeal in 2013 to enable us to access medical treatment for Elin, and it helped us to travel to a hospital in the US in the summer of 2014. It helped give us precious time with Elin.

 

Elin fought so hard to have a normal life despite her illness, and we are so proud of the way she continued to go to school throughout her treatment and attend her countless clubs. 'Never retreat, never surrender!' became her motto, and she will always be our inspiration.

 

We are devastated to lose Elin and we will never be able to convey the scale of our loss. No other child or family should have to face this and the fundraising through this appeal is for vital research into treatments for this devastating disease.

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News

 

Over recent months, we have been working with the wonderful team at The Royal Marsden and The Institute of Cancer Research - notably with Elin's consultant Dr Lynley Marshall, and Professor Janet Shipley and her research team. I can't imagine a more passionate, compassionate and inspiring group of people. It has been incredibly humbling to meet them.

 

In our meetings, we explained the moving and generous response to the Appeal and our desperate drive to open up research into treatments for Ewing's Sarcoma.

 

We are so honoured to be able to share with you the impact of the fundraising for the Appeal. The Elin Rose Appeal and The Institute of Cancer Research are now coming together for researchers to begin cell-line research into two new potential treatments for Ewing's Sarcoma. The initial ICR proposal document can be viewed on the right (I hope it opens for everyone - please contact us if you can't see a copy and would like to).

 

We have also learnt that The ICR would now like to create a full PhD from this pilot research, as they consider the area to be so promising. This will follow on from the initial research and will mean we have a PhD student working full-time on this research until 2020. We are moved beyond words that they have named this the Elin Rose PhD Studentship.

 

We are delighted to announce that an exceptional postgraduate student from Durham University, Antonio Romo Morales, has just been selected to join Professor Shipley's team under the Studentship. The Elin Rose PhD Studentship, which will advance the understanding of Ewing's Sarcoma treatments, begins Autumn 2016. We are so grateful to so many for making this happen.

 

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We have also been working with the Ewing's Sarcoma Research Trust and are so pleased to join them in helping to fund research led by Professor Sue Burchill (Professor of the Children's Cancer Research Group in Leeds).

 

This research into cell biomarkers could help identify patients that have more aggressive tumours through a simple blood test - leading to more effective treatment combinations.

 

We are so grateful to the ESRT for all their help and we are proud to join them in supporting this very promising research. Thank you Nigel, Matt and team for all your tireless work.

 

'Giving' by Les Quennevais School has been recorded for the Elin Rose Appeal.

It can be downloaded now on iTunes and Amazon.

 

Thank you so much Gerry Cartwright and everyone involved with the song!

Dan MacFarlane - guitars, Abi Gallichan - drums, Alice McDermott and JessicaToudic - cellos, Jessica Bentley and Sara Strudwick - vocals,

Gerry Cartwright - bass, Ivor Richards- engineer, Pete Jones - artwork (incorporating logo by Harvey Waller)

 

WE WOULD LIKE TO THANK ALL THE SUPPORTERS OF THE ELIN ROSE APPEAL.

For more details of the appeal and the incredible fundraising events being organised, please read on.