This festive season the Nystagmus Network is celebrating the children and adults with nystagmus who fill the lives of their families and friends with twinkling light, love and laughter. We’re asking you to tell us about your nystagmus stars – the adults and children who fill your life with light and make you proud of … Continue reading Our #NystagmusStars
Category: Charity highlights
Farewell Richard and thank you
On Saturday 28 September the Nystagmus Network bid a very fond farewell to its Chairman of 8 years, Richard Wilson OBE Richard joined the charity as a trustee in 2008 and rose to Chairman in June 2011. At the Annual General Meeting Nystagmus Network Founder and Honorary President, Vivien Jones gave a heartfelt speech in … Continue reading Farewell Richard and thank you
Open Day 2019 – the highlights
Over 200 people gathered together on Saturday 28 September at the spectacular Principality Stadium, Cardiff for the Nystagmus Network Open Day 2019. To the strains of Sospan Fach, by Cerys Matthews, Chairman of the Nystagmus Network, Richard Wilson OBE took to the stage to welcome everyone. Up next, Nystagmus Network Founder and Honorary President, Vivien … Continue reading Open Day 2019 – the highlights
Research Strategy 2019 to 2022
The Nystagmus Network trustees publish today their Research Strategy document for the next 3 years of nystagmus research, collaborations and funding arrangements. CLICK HERE to download your free copy today. Read more about nystagmus research, here.
Jeans for nystagmus genes
Children with nystagmus receive a grant from Jeans For Genes Day 2019 In July 2019, the Nystagmus Network is celebrating after hearing the news they will receive a grant from Genetic Disorders UK, the national charity which organises the annual fundraising day, Jeans for Genes Day. This grant, from funds raised on the Day, will … Continue reading Jeans for nystagmus genes
Thank you – you are amazing
As ‘wobbly week’ draws to a close for another year we just wanted to thank everyone for making Nystagmus Awareness day 2019 such a success. Thank you to our fundraisers, event organisers and all the parkrunners. Thank you for your amazing nystagmus success stories, your videos, photos, your donations, presentations, displays and quizzes and thank … Continue reading Thank you – you are amazing
Trustees discuss Parent Power with Marsha
On Thursday 20 June, Nystagmus Awareness Day a group of Nystagmus Network trustees met with Marsha de Cordova MP in Parliament. Earlier that morning, Marsha had tweeted her own Nystagmus Awareness Day video message in which she asked us all to celebrate the amazing achievements of people with nystagmus and support and encourage our children … Continue reading Trustees discuss Parent Power with Marsha
Mike’s wiggly walk
On Nystagmus Awareness Day we are proud and delighted to announce that our newest supporter, Mike plans to walk the length of New Zealand to help find a cure for nystagmus. The route he’s following is the Te Araroa pathway, taking in both the north and south islands, on foot and sometimes in a kayak, … Continue reading Mike’s wiggly walk
Our wobbly week competition
It’s wobbly week! And it’s Nystagmus Awareness Day this Thursday, 20 June. We want to raise as much awareness of nystagmus as possible and make sure that everyone has a chance to take part, so today we’re launching our wobbly week competition: Nystagmus is … Following on from Roger’s amazing description of his nystagmus, we … Continue reading Our wobbly week competition
Parent Power – our new project, funded by the Community Fund
The Nystagmus Network is delighted to announce that we have been awarded funding by the Community Fund for a brand new project, called Parent Power. The aim of the project is to empower parents and carers to advocate for their children with nystagmus to ensure they access appropriate educational support in school or early years … Continue reading Parent Power – our new project, funded by the Community Fund