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
I made my first contribution to the Nystagmus Network Focus newsletter after much parental cajoling and days, weeks, months, if not years, of adolescent procrastination, in the mid-1990s. To save readers from searching the archive, I’ve got what I consider to be mild nystagmus and bad short sight and astigmatism. Contact lenses are better than … Continue reading A mum with nystagmus shares her story
Our latest video blog features an interview with one of our young members! In the video Tom talks about starting his new class at school and how he is a vital part of his school football team! Everyone at the charity would like to say a big thank you to Tom for sharing his experiences.
Today we are excited to officially announce our new volunteers at the Nystagmus Network! Earlier this year we started a recruitment drive to find people who were passionate and committed to supporting the nystagmus community as part of our peer-to-peer support model. The charity was inundated with applications, ranging from adults with nystagmus to healthcare … Continue reading Meet our new Nystagmus Network volunteers!
Our latest video blog features an interview by our very own Sue with two of the charity’s fundraisers! Gavin and Paula Birch recently held a fun day and football match for the Nystagmus Network where they were able to raise funds and awareness of the condition. Their daughter Freya was diagnosed with nystagmus when she … Continue reading Fundraising for the Nystagmus Network
When your child has nystagmus there might be slightly more to think about before you wave goodbye at the school gates than new shoes and homework diaries. Especially in the early years, when your child can’t necessarily advocate for themselves, it can be helpful to plan a meeting with the new teacher either ahead of … Continue reading Nystagmus and the new school term – by Elisheva Sokolic
Our third video blog has been recorded by Steve McKay who is a trustee at the Nystagmus Network! During the video Steve talks about how he took up photography and why he recommends it those people with nystagmus who are looking to start a new hobby.
One of our main objectives at the Nystagmus Network is to provide information and support to the nystagmus community. To achieve this we have been working hard reviewing all of our documents to make sure they are up to date, readily available and appeal to a wide audience. Not only have we have produced brand … Continue reading Check out our new nystagmus booklets!