If you ever visit our Facebook page you will know Chris. She’s very knowledgeable about nystagmus – and sight impairment generally and so generous to everyone with her time and support. Here’s her amazing nystagmus story: Back in 1973, living at home with my parents, I read in our local paper about a new national organisation … Continue reading How amazing is Chris?
Here’s Dave’s nystagmus success story, in his own words. I have congenital nystagmus. The main limitation I have experienced is not being able to drive. However, at the age of 68, I can reflect on what I have been able to achieve in my life and feel very happy. I have been happily married for … Continue reading How amazing is Dave?
A Mum’s story: Denni-Leigh was born weighing 5.15lbs on a sunny June morning. She was a perfectly beautiful newborn baby. Only at about 4 weeks old the health visitor noticed that something was wrong with her eyes. We were told that Denni-Leigh had congenital nystagmus, astigmatism and a squint and was extremely long-sighted. Being such … Continue reading How amazing is Denni-Leigh?
Nystagmus Dad, Robin, writes: My 9 year old son, James, has OC Albinism and Nystagmus, but he and I started learning the guitar together about 3 years ago ( he obviously struggled to see the music and the strings on the guitar, but, when blown up, he can read the score and any annotation written … Continue reading How amazing is James?
Jac is running a 2.5k fun run this month to raise awareness of nystagmus and fundraise for the Nystagmus Network. His Mum and Dad didn’t find out Jac had nystagmus till he was 3 years old and always tell him he can do anything he wants. We’re sure Jac will achieve great things! You can … Continue reading How amazing is Jac?
Ella’s Mum tells us about her 16 year old daughter, Ella, who has nystagmus and optic nerve hypoplasia. She has also had to endure major surgery to straighten her spine, having discovered she was suffering from scoliosis. “Ella is a singer/songwriter and at the end of last year won Leeds City Council Breeze has Talent, … Continue reading How amazing is Ella?
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!
Here’s Vicki’s nystagmus success story … I have congenital nystagmus and ocular albinism and want to help to encourage other people to reach their potential. I graduated from Durham university with a degree in Maths and Physics. During the first couple of years of my degree, I refused the extra help I deserved due to … Continue reading How amazing is Vicki?
Ben’s Mum tells us: “I am incredibly proud of my son, Ben who is 10 and has nystagmus. He plays for the under 10s Winslow Tigers football team. Recently he scored a hat trick and received the Man of the Match Trophy. He has to work twice as hard as his friends, as he hasn’t … Continue reading How amazing is Ben?
We join our sister charity, Albinism Fellowship UK, today in celebrating Albinism Awareness Day, with a special guest blog post from AFUK Chair, Roselle Potts. Help us to raise positive awareness on our international campaign day June 13th is an important date for people with albinism everywhere. It’s International Albinism Awareness Day, when people with … Continue reading Albinism Awareness Day