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Information for Parents
The Nystagmus Network provides much needed information for parents of newly diagnosed children and babies . We understand that this is a very difficult time and that there is sometimes not very much information available. Our free to download Parents Booklet provides a clear introduction to the condition and gives parents an idea of what … Continue reading Information for Parents
Our Christmas photo competition
Following the success of the Nystagmus Network photography competition in 2017 in honour of our former trustee, the late Steve McKay, we’ve decided to launch a Christmas 2018 photo competition. The winning photograph will feature on our 2019 Christmas cards. Entrants can be any age. They must have nystagmus themselves or be the close relative … Continue reading Our Christmas photo competition
Support for adults with nystagmus
Whether you’ve had nystagmus all your life or have acquired it more recently, the Nystagmus Network is here to support adults with the condition, with information, research updates, news, meetings, membership and more. Or why not get involved with one of our fundraising activities?
Real life nystagmus stories
The Nystagmus Network is pleased to be able to bring you so many real life nystagmus stories, thanks to the thoughtfulness and generosity of members of the nystagmus community. Today we bring you Mélissa’s story.
Free resources for schools
Great for inclusion and awareness raising, the Nystagmus Network has free to download materials for schools. Don’t see what you need – please ask us. Download your free resources here.
Guest post: Mélissa’s story of acquired nystagmus
Mélissa was a healthy young woman, living and working in Canada until suddenly she acquired nystagmus and everything changed. Melissa is now adjusting to her new life with nystagmus and wanted to share her story of hope for the future … My beautiful, wobbly world My name is Mélissa Khalifé, I’m 30 years old and … Continue reading Guest post: Mélissa’s story of acquired nystagmus
Our new local groups
Our very first regional nystagmus network is already up and running in Manchester, hosted by our trustee, Marie. There are lots more local groups to come in 2019, giving more and more people the opportunity to meet up and share information and experiences. If you would like to join one of our new groups, or … Continue reading Our new local groups
Dr Helena Lee on treatment for albinism and childhood eye conditions
Improving eye development for children with albinism and other sight disorders – hear from groundbreaking researcher Dr Helena Lee, Academic Clinical Lecturer in Ophthalmology at the University of Southampton. Watch and listen to Helena’s talk here.
Katie lobbies MPs
A Wandsworth student visited the House of Commons to lobby Parliament this week on behalf of Young Vision Alliance (YVA), according to an article in Your Local Guardian. Katie, who is in Year 13 at Putney High School, represented YVA as part of their “Our Futures Matter” campaign. The alliance are campaigning for children with vision impairment to … Continue reading Katie lobbies MPs