Nystagmus Network volunteer education advocate and trustee, Frances Lilley, is a member of a group called the Young Vision Alliance. The Alliance is researching the difficulties children and young people are facing in education prior to an education campaign later this year which will be calling for the government to address key issues. You can … Continue reading Help shape education support for children with vision impairment
James and his little brother, Thomas, are taking on a very special challenge this summer to raise money for two charities very close to the family’s heart. James (8) and Thomas (5) have decided to challenge themselves to walk 118 miles throughout August to raise money for Chromosome 18 Registry and Research Society Europe and … Continue reading James and Thomas’s Summer Challenge
The biggest nystagmus event of the year takes place on Saturday, 29 September in Birmingham. This is our annual Open Day, where 200 nystagmus families get together to talk about research, education, support, assistive technology, mobility, education and general day to day living with a visual impairment. The Nystagmus Network is seeking sponsorship from commercial … Continue reading Sponsors sought for Open Day 2018
Calling all sports and athletics clubs – we want you to join us for ‘nystagmus in the open‘ on national and international Nystagmus Awareness Day on Wednesday 20 June. We need you to help us prove that children and adults with nystagmus can take part in sport and fitness, despite their visual impairment. So please … Continue reading Nystagmus Awareness Day – for sports clubs
Whilst we are all looking forward to the very first Nystagmus Awareness Day in the summer – on Wednesday 20 June – for those of you who miss the old days, when Nystagmus Awareness Day was celebrated in November, you can get this year’s ‘Wobbly Week’ off to a great start by coming sledging or … Continue reading Nystagmus Awareness Day – for snow men!
It is with great sadness that we announce the sudden and unexpected death of Trustee Steve McKay from Newton Abbot in Devon. Steve suffered a tragic road accident on Thursday 1 December which rendered him unconscious and he never recovered, passing away on Sunday 4 December. Steve has been a highly-valued Trustee with the Nystagmus … Continue reading Steve McKay announcement
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