NDF is so happy to share the news that author and presenter, Simon Reeve, has become their first Ambassador. Simon worked on the Big Life Fix with Josh, who has Norrie disease, where he to got understand the difficulties that visually impaired children experience in everyday life. Please follow the link below for more information.
Norrie Disease Foundation announces first Ambassador
The Norrie Disease Foundation (NDF) has recruited Simon Reeve as its first Ambassador to help raise awareness of the rare disease which results in male children being born severely visually impaired.
While presenting The Big Life Fix for BBC Children in Need, Simon Reeve met Josh who has Norrie Disease and was born blind and heard first-hand how difficult Josh finds it to cope with the school playground. The ‘fix’ was an especially adapted play facility that incorporated guidance paving or ‘braille for feet’ that gave Josh the confidence to play with other children.
Norrie disease mainly affects boys and is a rare X-linked genetic condition that causes blindness or severe sight impairment at birth. A secondary symptom that can begin in early childhood is the loss of hearing, with hearing aids or implants prescribed over time. Other symptoms can include autism, cognitive impairment and delayed development.
With Simon Reeve’s support, the charity hopes to raise awareness of the challenges faced by children with Norrie disease and highlight the important role play facilities have on ensuring visually impaired children are able to socialise with their peers.
Simon Reeve, Norrie Disease Foundation Ambassador said: “Meeting Josh through The Big Life Fix drove home how difficult life is for children affected by Norrie disease. There are huge obstacles in the way of many of those everyday things we take for granted for our children. Having an organisation like the Norrie Disease Foundation to raise awareness of these challenges and to provide vital support can make all the difference to the children and families affected. I’m happy to be able to support a worthwhile charity.”
Wendy Horrobin, Chair of the NDF and mother to Josh, age 8 with Norrie disease, said: “We are delighted Simon agreed to become an Ambassador. Simon will be instrumental in helping us to promote the charity and be there to support more families affected by Norrie disease.”
Set up to support the UK community affected by Norrie disease and to secure research funding, the charity has already been successful in applying for a research grant into the Norrie hearing loss from Newlife and from Sparks, The Children’s Medical Charity.
The charity was launched with funding from Jeans for Genes Day.
To volunteer, donate or simply find out more, contact www.norriedisease.org.uk