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

Nystagmus research grant funding open for applications


The next round of small grant awards for nystagmus research is now open for application. The grant, funded jointly by Fight for Sight and the Nystagmus Network is worth up to £15,000. The Fight for Sight / Nystagmus Network Small Grant Award One award to support clinical research to address visual impairment associated with nystagmus, focusing on … Continue reading Nystagmus research grant funding open for applications

Nystagmus news for eye care professionals


The Nystagmus Network now produces a digital newsletter for Dispensing Opticians and Optometrists. The first edition has just been published, bringing nystagmus news, stories and information directly to high street and community practices. Read the newsletter and subscribe here