Member Article

Former MP heads to the North East

Former politician and journalist Michael Portillo will visit the North East today to meet the mother of Jonny Kennedy, known for the brave documentary ‘The Boy Whose Skin Fell Off’ which chartered the last few months of his life. Tonight’s event at Newcastle’s Biscuit Factory will celebrate the life of Jonny who suffered from dystrophic epidermolysis bullosa, EB – a painful genetic skin condition which leaves sufferers covered in blisters and sores. Mr Portillo will be joined at the event by Jonny’s mother Edna, and Neil Braithwaite of Dickinson Dees, who is Chairman of the Appeal Council in the North East. Over £600, 000 has been raised through the Jonny Kennedy Memorial Appeal so far, which funds the specialist paediatric and adult nursing service across the North East, social care support, welfare grants for EB families, adapted equipment, and holidays. The speakers will address the local business community and underline how they can play a role in raising funds and awareness for such a vital service throughout the region.DebRA UK is the national charity working on behalf of people with the genetic skin blistering condition, Epidermolysis Bullosa (EB). For more information about their work, visit: www.debra.org.uk/.

This was posted in Bdaily's Members' News section by Ruth Mitchell .