The Norrie Disease Foundation
Promoting research and raising awareness of Norrie Disease.
Who we are
We are the Norrie Disease Foundation, a charity working within the Norrie community in the UK. Our aim is to promote vital new research and provide more support to families by further strengthening the Norrie network.
Norrie disease is a rare X-linked genetic condition which causes boys to be born blind or with severe sight impairment. Secondary symptoms can include progressive hearing loss, cognitive impairment, autism and delayed development.
How we can help
If you are visiting this page as a family with a new diagnosis of Norrie disease, we want you to know that you are not alone. The Norrie community is growing, it is strong, and keen to support, hear and share experiences.
As with any rare disease, it is difficult to know the exact numbers affected. We believe there are approximately 500 families worldwide. However, as awareness of the condition is increasing more patients are being diagnosed with Norrie disease and our community is growing.
We work with the international Norrie community, sharing information and resources.
Sign up to learn more about the Norrie Disease Foundation and join our community.
If you are a healthcare professional or a researcher interested in Norrie disease we would like to hear from you to explore how we can work together.
The Norrie Disease Foundation does not offer medical advice. We promote research and share experiences and contacts. Please contact a healthcare professional for medical advice.
David Wilkins – Mentor
David Wilkins has joined us as an NDF Mentor. David has Norrie Disease and says ‘Even I still can’t quite believe it!’ David is blind with no light perception at all, partially deaf with hearing aids in both ears and dyslexic. David says ‘I am disabled, and it is thanks to Norrie that I am disabled. But there is no reason why Norrie should hold you back. Indeed it will only hold you back if you allow it too.’
David says that ‘It is thanks to my parents I have gone from strength to strength in my life. I’ve done a 12000 foot parachute jump from a plane (not solo), I’ve sailed the high seas on a tall ship for the disabled which involved climbing the mast right to the top and getting absolutely drenched more times than I care to remember.’
David has been encouraged to follow the dreams he has as much as he can. He lives alone in a house of his own. He needs help with cleaning and looking after it, but he cooks, washes and looks after himself. David has also worked In South Africa, Lincoln and Guernsey as a journalist whilst pursuing his ultimate goal of being the BBC’s foreign correspondent in the city of Jerusalem (this hasn’t happened yet) and he continues to seek adventure wherever he can find it.
David says of his Mentoring role ‘I am offering to be a Mentor for the NDF because I believe and know that you can dream the undreamable, but this is no good unless you can see it happening in front of you. Maybe your dream is bigger than mine, or maybe you just want to make a cup of tea without any help, cross the road on your own, live alone one day and have a family. Maybe you are a parent on this group and you want to know whether your child can succeed, and what help they need from you. Maybe you’ve been told so many times what you cannot do or what your child cannot do that you’re finding it hard to decide what you can do for yourself. I’m here to help you along. If you’ve grown up or are growing up with Norrie I will get in touch with you, talk to you, encourage you and meet up with you. Maybe see if we can set some achievable goals, starting small and getting bigger as we go along.’
David’s vision for the next year is:
● To give parents of Norrie children and those living with Norrie disease some pointers based on what helped him when he was growing up
● To be there for those who would just like someone to talk to either over Skype, email, facebook or phone
● To have and share some fun amongst the Norrie community - could be meeting up, sharing stories and jokes
● To listen to what other members of the Norrie community have to say
● To spread self-belief amongst the Norrie community
© Copyright Norrie Disease Foundation 2017
The Norrie Disease Foundation
PO Box 12476