The Phoebe Research Fund was founded in February 2015 by myself, Zoe Crowson, to facilitate funding towards a possible cure for my daughter Phoebe and fellow Recessive Dystrophic Epidermolysis Bullosa Sufferers like her. There are only 5000 EB sufferers in the UK and only 20% have the type of EB Phoebe suffers from. In effect Phoebe has a rare form of a rare disease and in actual fact it took St Thomas’s Hospital 3 months to determine the type, a situation that would normally take just 24 hrs.

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.

Stem Cell Research

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.

Gene Therapy

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.

Protein Therapy

Dr David Woodley and Chen of the University of Southern California are pioneering protein replacement therapy for Dystrophic EB.

Drug Therapy

Professor Irwin Mclean is working at The University of Dundee to establish the best route for a cure, whilst delivering treatments on the way.

Watch our media video

Phoebe's Celebrity XMAS video 2016

FEATURING

  • Tony Hadley
  • Ralph Little
  • Tommy Walsh
  • Giles Alderson
  • Ryan Goscinski
  • The Mayor Of Peterborough
  • Richard James-Neale
  • Leicester Tigers
  • Stephen Arnold
  • Jenny Frost
  • Sophie McDonnel
  • Doncaster Rovers
  • Tahmac
  • James Lambert
  • Rob & Rachel Persani

How to Donate

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