How amazing is Poppy?

My name is Poppy. I’m 11 years old. I was diagnosed with nystagmus when I was 2 months old. I never allow my nystagmus to hold me back. I love dancing at the Lynsey Allen school of ballet and I also love horse riding. I’m so nervous to be starting high school in September (lots … Continue reading How amazing is Poppy?

Albinism Awareness Day

Zoom celebration for International Albinism Awareness Day on 13 June 2021 Guest post from Roselle Potts, Chair of the Albinism Fellowship To mark International Albinism Awareness Day* on 13 June the Albinism Fellowship is running a mini conference on Zoom. The event will kick off at 2pm and after a brief introduction session there will … Continue reading Albinism Awareness Day

Two new nystagmus research projects funded

Fight for Sight and Nystagmus Network are funding research into the impact of glare in infantile nystagmus and albinism in the hope of improving outcomes for people with the condition. People with nystagmus often experience glare, but until now this has not been researched thoroughly. The team at University of Leicester, led by Dr Frank … Continue reading Two new nystagmus research projects funded

How amazing is Katrina?

Katrina did well at school, has worked hard throughout the pandemic and keeps herself fit with clubbercise. She says: I have had congenital nystagmus all my life and I have never let it hold me back. This is Katrina’s amazing nystagmus story My name is Katrina, I am 22 years old, I attended mainstream school … Continue reading How amazing is Katrina?

How amazing is Tim?

Tim has a whole clutch of awards for his work. He says: I ain’t done bad for a lad that can’t see too well. This is Tim’s amazing nystagmus story I was born with Congenital Nystagmus. I’d probably describe my sight as middle of the range, but still not good enough to drive. After leaving … Continue reading How amazing is Tim?

How amazing is Doug?

Earlier this year, Doug ran the Royal Parks Half Marathon for the Nystagmus Network. He raised £200. Doug says: 13.1 miles. 25,000 steps, a step for every time someone has told me I need to have my glasses checked. This is Doug’s amazing nystagmus story I was born with congenital horizontal nystagmus and astigmatism, thought … Continue reading How amazing is Doug?

Trustees publish their annual review

The Annual Report 2020 by trustees of the Nystagmus Network is now lodged with the Charity Commission and available to the public to read. 2020 was undoubtedly a most challenging year for the nystagmus community, the Nystagmus Network, people and services everywhere. Despite the challenges of Covid-19, however, Chair of Trustees, Tim Cuddeford is pleased … Continue reading Trustees publish their annual review

Special edition scented candle raises funds for the Nystagmus Network

This lovely scented candle is specially created for the Nystagmus Network by Oli at No. 14 The Wick to celebrate Nystagmus Awareness Day 2021. The scent is Bergamot and Sage using a blend of essential and fragrance oils.  The oils have been chosen for the following aromatherapy attributes. BERGAMOT – Uplifting and refreshing. Reduces stress and anxiety SAGE … Continue reading Special edition scented candle raises funds for the Nystagmus Network

Do you use your local offer?

Since 2014 all UK local authorities are required to put information about services for families with disabled children in a special web page called the Local Offer. Have you found yours? Do you use it? Is the Nystagmus Network listed as a support service? We’re trying to make sure that everyone receiving a diagnosis of … Continue reading Do you use your local offer?

Thank you, Tim

Children’s author, Tim Pearce who modestly describes himself as ‘the favourite children’s author you’ve never heard of’ joined the Nystagmus Network earlier this week to lead a fun and inspiring story writing workshop for children. Tim began by sharing his journey to publishing his first book ‘Secret Agent Striker’ and then gave us a sneaky … Continue reading Thank you, Tim