So, why is funding research for ultra-rare childhood cancers so important?

Only £3 in every £100 spent on cancer research goes to childhood cancers. Treatment options, cure rates and research for paediatric chordoma fall well beneath other childhood cancers.

When we set up the DBW Charity as a legacy to our little boy, we felt passionately about funding specific projects to help progress chordoma research and improve the chances of survival for other children and their families.

So far, we have contributed £50,000 of funding towards Professor Adrienne Flanagan’s project taking place at The Cancer Institute, University College London through The Chordoma Foundation, and another £5,000 directly.

One of the aims of this project is the formation of a UK-wide Chordoma Cohort for all children with chordoma in the UK. As chordoma is so rare it is important to identify all children with chordoma in the UK so that we can learn more about this disease. We hope this will represent the first step towards the initiation of clinical trials of promising new drugs for paediatric chordoma.

To read more about the research that has been undertaken from our annual donations, please click on the relevant year below:

2021 – Funding Ongoing Model Characterisation and Drug Screening Programme

2020 – Funding Model Characterisation and Drugs Screening Programme

2020 – Funding the Development of a Blood Test to Monitor Disease Progression

2019 – Funding in-depth genomic molecular characterisation of two paediatric chordoma cell lines and PDX models

2018  – Funding the study into the genetic, epigenetic and transcriptomic changes found in the chordoma’s of children and adults

Since its founding, The Drew Barker-Wright Charity has supported the work of Adrienne Flanagan and her UK Chordoma Study. If your child has been diagnosed with paediatric chordoma and you would like to reach out to the team to join the UK based study and make sure they are aware of your diagnosis, please contact their coordinator at The Royal National Orthopaedic Hospital.

Biobank and Chordoma Coordinator

E: rno-tr.histopathology@nhs.net T: 0208 909 5347