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!
If you’ve signed up for the first Snow Camp of 2018, on 17 June, here’s a little taster of what to expect on the day. There’ll be skiing and sledging of course, but don’t forget to say hello to some very special visitors. They’ll all be there joining in the fun. STOP PRESS – Menna … Continue reading Snow Camp VIPs
Whilst we are all looking forward to the very first Nystagmus Awareness Day in the summer – on Wednesday 20 June – for those of you who miss the old days, when Nystagmus Awareness Day was celebrated in November, you can get this year’s ‘Wobbly Week’ off to a great start by coming sledging or … Continue reading Nystagmus Awareness Day – for snow men!
Thanks to Outspan Rebels team founder, Jamie Fuller, who has managed to secure sponsorship from the Snow Sports Foundation, there will be two Nystagmus Network Snow Camps this summer. These will take place at the Snow Dome, Milton Keynes, on Sunday 17 June and Sunday 15 July. If you would like to come along for … Continue reading Nystagmus Network Snow Camps 2018
Jamie and Josh Fuller are well known in the nystagmus community as the father and son team who delivered an inspirational presentation at Open Day last September. Jamie organised the Nystagmus Network’s first ever ski experience last year and this year they have promised us not one but two ski camps. The Outspan Rebels VI … Continue reading The Outspan Rebels VI ski team
We are delighted to announce the final dates and times for our skiing taster sessions for members of the Nystagmus Network! There are three different venues offering the group sessions and these are listed below. You can sign up by completing the form at the bottom of the page. Beginners Hemel Hempstead – 23 November at … Continue reading Sign up to ski!
Our son Joshua was born with oculo-cutaneous albinism in 2003. It was a surprise to both our families as no one on either side had any recollection of anyone in the family having albinism. The thing that has affected Josh most is his visual impairment. His eyes let in too much light due to the … Continue reading Do you want to ski like Josh?
If you would like to take part in a skiing event please complete the form below. [contact-form-7 id=”655″ title=”Contact form 1″]
This week the video blog at the Nystagmus Network features the amazing Josh! Josh is a keen skier who loves to take part in ski competitions. However, he was once told that even though he has nystagmus, he’s not visually impaired enough to take part in disability races by the IPC. So, what did … Continue reading No limits