Anna’s Hope is the leading children's brain tumour charity in the East Of England. We are committed to giving hope to children and young people diagnosed with a brain tumour.
It was inspired by Anna Olivia Hughes, who tragically died from a brain tumour aged only three years and eight months, and was set up by Anna's parents Rob and Carole Hughes and her five Godparents in October 2006.
Phoebe Crowson has Recessive Dystrophic Epidermolysis Bullosa (RDEB). This is a rare genetic inherited lifelong condition in which the skin is fragile and will blister and shear away with minimal friction and trauma.
Blisters are not self-limiting and will enlarge unless lanced and drained. It affects other muscosal membranes such as eyes, mouth and oesophagus causing painful blistering and scarring as healing occurs. Raw areas are dressed with specialist dressings and can be very painful requiring oral pain relief.
The condition is life-long, there is no cure and the treatment is symptomatic
The Phoebe Research Fund hopes to help sufferers by funding essential research. There are four main types of research for this type of EB made up of Cell, Gene, Protein and Drug Therapy.
With your help a cure is possible
For more information, contact us by telephone 07718 071645 or by email