Description
Thank you from Tony Byrne, CEO DEBRA
Since we launched our A Life Free of Pain appeal back in October 2022, you have helped to raise over £5m to help stop the pain of EB. There is still much to do but it is hugely satisfying to have secured this funding which has enabled us to invest in our first drug repurposing clinical trial. As we look to this year, we are confident that more drug repurposing clinical trials will follow, as over £1.8 million of research grants have been awarded in 2023.
Our mission to stop the pain of EB goes on though. Today, people living with EB need enhanced community support and better access to specialist EB healthcare. We need to raise awareness of this terrible condition with GPs so that more people are officially diagnosed and referred so they get the specialist treatment they need. There are also more drugs we need to clinically test as we strive to secure effective drug treatments for every type of EB.
This month DEBRA UK has launched a £5m appeal for 2024, BE the difference for EB to provide enhanced EB care and support for today and effective drug treatments for tomorrow. We believe this £5m target is achievable and we can improve the lives of thousands of children and adults living with EB today and ensure that in the future there is an approved drug treatment for every type of EB.
Thank you again to our friends at Reed Smith and to Ian Stafford and Jason Robinson OBE, for making our DEBRA dinner possible and helping us with our fundraising.
Finally, we want to thank everyone for your continued support. We won’t stop until no one suffers from the pain of EB.
Thank you again for your support.
Tony Byrne,
CEO, DEBRA
