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
Hi there. I just wanted to share with you the amazing journey I’ve embarked on in Blind Tennis, a sport that has given me my freedom, my independence and my life, whilst living with Nystagmus, strabismus and astigmatism! A couple of weeks ago I was part of the team of 8 representing Great Britain in … Continue reading How amazing is Rosine?
I’m Charlie, I’m 14 years old and live in Lincoln. I live with my parents, my brother and sister. I’m currently studying for my GCSEs. I would love to do Maths, Psychology and Government and Politics A levels. Eventually, I’d like to train as a Barrister in Criminal Law. My life growing up has always been a … Continue reading How amazing is Charlie?
Matt has nystagmus, but, as his Mum tells us, he is on the road to a stellar career. Matt is currently the director / choreographer for a production of Joseph in our local area later this year. There are 50 young people in the show and he works tirelessly for the group. He has been … Continue reading How amazing is Matt?
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
Katrina thinks she’s just a regular student who happens to have nystagmus – we think she’s an amazing nystagmus ambassador! Here’s Katrina’s nystagmus story … I am 19 years old. I attended a mainstream school and was treated like everyone else. I felt no different. In my exams I had A3 papers and extra time, … Continue reading How amazing is Katrina?