With thanks to Mike Hughes, our volunteer benefits adviser, who has today supplied a newly updated edition of his booklet on nystagmus and benefits. The new version, taking into account all the latest changes in legislation, is now available free of charge. Download your copy here. Mike will, of course, be at Open Day to … Continue reading Publication update
Thanks to Paul Bowry and his family, the Nystagmus Network will be enjoying our first ever fundraising Car Boot Sale on Tuesday 18 September. Paul has been running boot fairs at the site in Essex for some time. Following his grandson’s nystagmus diagnosis, Paul decided to negotiate a charity collection with the organisers at one … Continue reading Another Nystagmus Network first!
Because there is such a close link between albinism and nystagmus, the Nystagmus Network works closely with Albinism Fellowship UK. Chair of AFUK, Roselle Potts, will be joining us this year at Open Day to speak with researchers, to find out more about our education advocacy service and chat with families affected by ocular or oculocutaneous … Continue reading Roselle is coming to Open Day
We’re delighted to confirm another opportunity to ski with the Nystagmus Network and the Outspan Rebels VI ski team. On Sunday 26th August we will be running a two-hour ski lesson at £20 per person at Snozone, Milton Keynes. From 2:30pm to 4:30pm we will have a beginners’ session on the starter slope and intermediates’ on … Continue reading VI skiing this Bank Holiday weekend!
It was a fantastic event. There were so many amazing people there to inspire adults and children to get out on the slopes and enjoy the snow. David Katz was there, sharing stories of his amazing photography career, despite having ocular albinism and nystagmus. The Outspan Rebels VI ski team were there, with their amazing … Continue reading Did you come to Snow Camp?
The first Nystagmus Network Snow Camp of 2018 takes place this Sunday, 17 June, at Snozone Milton Keynes. Lots of families have signed up to enjoy a day of sledging and skiing alongside the famous Outspan Rebels VI ski team. Their chief coach, Charlotte Evans MBE, will be on hand with training hints and tips … Continue reading Menna and Jen are coming to Snow Camp!
Tickets to the biggest UK nystagmus event of the year will soon be available to book. Subscribed members of the charity will be able to book their priority free tickets to our annual Open Day from 12.00 midday on Thursday 26 June. Members will be notified with details of how to book their places by … Continue reading Open Day tickets for members – available soon
This is a message from Marcus at Tate in which I tell you about our forthcoming Audio Description events at Tate Britain, this month and next. Tate Britain, Monday 18th June 2018 at 10.30 am for refreshments and 11.00 am – 12.15 pm tour. Aftermath: Art in the Wake of World War One Join Marcus and … Continue reading Guest post from Marcus at Tate Britain
We are delighted to be able to welcome Marsha De Cordova MP, Shadow Minister for Disabilities, as our keynote speaker at this year’s Open Day in September. As a sneak preview, follow this link to hear Marsha talk about her nystagmus and how she must adapt her ministerial work to accommodate her visual impairment.