The idea of The Phoebe Research Fund is that because it’s so rare, finding a cure is in fact harder as there is currently no government funding. Furthermore, any support from other sources tends to go on other areas which will help sufferers of a different type of EB which is predominantly Simplex. All funds raised by The Phoebe Research Fund will go into research for Recessive Dystrophic EB as this the life limiting form and in fact the worst type of EB.
Professor John McGrath is working to increase cell specificity to give an entire body treatment. Working at the top London hospitals, Guys, St Thomas’s, Kings College and London UK. Professor John McGrath is establishing the effectiveness of blood stream delivery of a specific subset of bone marrow cells. This will be coupled with a trail of blood cells to see if there are further benefits of introducing cells that have a compatible tissue match. Minnesota (USA) based Jakub Tolar is working alongside Professor John McGrath to work on correcting cells to be reintroduced to patients.
Dr Waseem Quasim, Professor Adrian Thrasher, Professor John McGrath, Institute of Child Health and Guildford Street London are carrying out trials to correct a sufferers own cells to be given to local sites. The aim would then be to correct cells for intravenous use aiming to give a whole body treatment.
Dr David Woodley and Chen of the University of Southern California are pioneering protein replacement therapy for Dystrophic EB.
Myself and my trustees are excited to announce the Phoebe 5km fun run through Stamford thist year. M READ MORE
See his message! https://www.youtube.com/watch?v=EOvst8LCDts READ MORE
Tracey & John Regis renewed their wedding vows and very kindly donated funds raised through dona READ MORE