In January 2024 our beautiful 17 year old daughter was diagnosed with Desmoplastic Small Round Cell Tumour - a rare and aggressive sarcoma that affects just 12 people in the UK per year.

It has a 5 year survival rate of just 15%.

Liz died on the 27th November 2024, just 10 months after her diagnosis.

When Liz was diagnosed DSRCT had no dedicated organisation fighting for funding. There is still no recognised treatment protocol. Finding information when Liz was first diagnosed was like hunting for a needle in a haystack. We are in the process of trying to change this - and have begun the process of setting up ‘Capture The Desmoplastic Small Round Cell Tumour Charity.’ We hope that this charity will help to change things, enabling families like ours to have access to kinder treatments and better outcomes, as well as support from those who understand when they need it the most.

Thanks to your incredible support, we have now superceded our first target of £100,000 and will fund a piece of research that will bring together the information from across the world into one usable document for physicians. Information that will also be shared in an accessible format for patients and parents. It’s an important first step in advancing knowledge and will help inform us which future research studies we should sponsor.

We are currently fundraising for a second research project which will focus on ensuring that those with Desmoplastic Small Round Cell Tumour can live a full life for as long as possible; focusing on the management of side effects and ensuring that palliative care is about Living not dying.

We know more effective treatment is needed. We know research into those treatments need to be prioritised but to move forward with that we need vital information from our initial research project. We also know that it is research that will take time, time many current survivers don’t have.

It is therefore imperative that we improve life quality now. Because everyone deserves to Live.

Together we can help change the future. Together we can make a difference.

Please donate if you can!

For more ways to help Capture achieve our mission please follow us on social media.

Facebook: Capture Desmoplastic Small Round Cell Tumour Charity

Instagram/ X: @CaptureDSTCTC