A Nystagmus Champion is someone who goes above and beyond to raise awareness of the condition, to raise funds or generally make life better for people living with nystagmus. The Nystagmus Champions of 2022, announced at our virtual Open Day on 1 October are: Lucy Mum to Maisie and partner to Myles, we’re sure it’s … Continue reading Nystagmus Champions of 2022
Tag: nystagmus heroes
Leicester optician puts nystagmus in Focus
Having nystagmus hasn’t stopped Leicester’s Khalil Musani from forging a career in optics and helping others look after their eyes When Khalil secured a Saturday job at a Leicester opticians in 2017 it proved to be the catalyst to fulfilling his ambition to work in optometry. Now, aged 21, and assistant manager at Specsavers Leicester, … Continue reading Leicester optician puts nystagmus in Focus
Volunteer for us!
The Nystagmus Network is a little charity with very big ideas. Do you want to be part of our exciting journey? If you have the skills and time to give for just a couple of hours a month to support the work of the Nystagmus Network, we’d love to hear from you. Whether you’d like … Continue reading Volunteer for us!
Hanni’s nystagmus story
Whilst the trustees oversee strategy and guide the direction of the charity, overall management and day-to-day operations are in the capable hands of our small dedicated staff team. Hanni is the newest member of the Nystagmus Network staff team. This is her nystagmus story, in her own words: When I was diagnosed with nystagmus in … Continue reading Hanni’s nystagmus story
Charlie’s Nystagmus Network football team
Charlie loves football. He also loves his team. When they were short of money to pay for the under 7s new kit, Charlie had the brilliant idea of asking the local bank. Banks have lots of money, don’t they? Charlie’s letter arrived on Luke’s desk and then Luke also had a brilliant idea. He decided … Continue reading Charlie’s Nystagmus Network football team
How amazing is Wyatt?
Wyatt has always had this positive outlook. He is determined, smart, and gives EVERYTHING his all! When he was 4 months old he was diagnosed with Nystagmus. We as parents were told that he would never ride a bike, play sports, or even read a book. Everything he would do would be a challenge for … Continue reading How amazing is Wyatt?
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
Thank you, Emma
For Halloween 2020 Emma and her very determined family held a coffee, cake and crafts fundraiser for the Nystagmus Network. All COVID-19 restrictions were followed and the family raised £400. An amazing effort! Thank you so much! At Halloween 2020 Emma and her very determined family held a coffee, cake and crafts fundraiser (remember those?) … Continue reading Thank you, Emma
Joanne sings for the Rising Phoenix
The voice of Nystagmus Network member, acclaimed soprano and Open Day 2020 keynote speaker, Joanne Roughton-Arnold features in the inspirational documentary, Rising Phoenix, a Netflix production charting the history of the Paralympic Games through the personal stories of some of the sports stars themselves. Described by Daniel Pemberton, the film’s musical director as “an incredibly … Continue reading Joanne sings for the Rising Phoenix
Join the Nystagmus Network for The 2.6 Challenge
Calling all nystagmus heroes … You, your family and friends are warmly invited to take part in The 2.6 Challenge from Sunday 26 April to help to save the UK’s charities. The Covid-19 pandemic has had a devastating effect on charities, with the cancellation of 1,000s of events and the loss of £billions in fundraising … Continue reading Join the Nystagmus Network for The 2.6 Challenge