Cure EBFreedom from EB
Funding research to target effective treatments and an eventual cure ‘Cure EB’ was what we thought when we looked down at our firstborn child, after receiving the diagnosis of Recessive Dystrophic Epidermolysis Bullosa. Shell shock- ed after learning that it was incurable, progressive, extremely painful and that it ended life early, we whispered the words desperate- ly in our heads as we held the hand of our tiny fragile, bright eyed gorgeous little girl. Once we realised how little funding was going into EB research and that change was only possible if this increased, we had to start funding research. This was first as the Sohana Research Fund, named after our daughter, and now as Cure EB. Our story is no different to the stories of all the EB research funding organisations and support groups around the world. With rare genetic conditions if parents did not step up, research would not happen. Our mission is in our name, we exist to Cure EB in all its forms. The charity was set up to maximise research spend with a pledge that all donations go towards research projects. All costs of events, admin and fundraising are underwritten by two of the trustees to make this possible. We fund research global- ly and only after review by scientific experts. We evaluate projects through- out the year which allows us to be flexible in our collaborations with other funding organisations and make us available to researchers when their project is ready to start and not only when there is a funding round. We fund projects that have translational possibilities which means that we do not generally fund basic laboratory research. The majority of our projects are late stage pre-clinical and clinical trials, with a particular focus on gene mod- ifying and gene corrective strategies. How we fund We are developing initiatives to aid translational research. We do fund projects and clinical trials on our own but we are very open to collaborating with other organisa- tions, to pool resources, maximise impact and have a good relation- ship with global EB research funding organisations. With the increase in biotech interest these relationships are broadening. Cure EB is pleased to be partnering with Debra UK to deliver the World Congress in January 2020. Uniting the global EB community, the EB World Congress is a huge opport- unity for all key stakeholders to learn about the very latest updates on current projects around the world and work together to devise strategies to accelerate EB research, treatments and cures. Cure EB is fully engaged in this collaborative forum to build greater momentum in the research community, supp- orting any initiatives that will speed up the process for effective research and treatments towards our ultimate mission - to Cure EB.
“What Cure EB has done for research into EB is nothing short of amazing. What was needed was a driver and Cure EB is push-ing the accelerator to the floor”
Professor John McGrath
GUYS & ST THOMAS FOUNDATION TRUST LONDON