Jeans for Nystagmus Genes: Delilah’s story


Delilah’s story: Delilah is helping to raise awareness of children’s genetic disorders with the UK children’s charity Genetic Disorders UK and their annual fundraising day, Jeans for Genes Day. This year, Jeans for Genes Day runs from Mon 16 – Fri 20 September and invites everyone to wear their jeans to work or school in … Continue reading Jeans for Nystagmus Genes: Delilah’s story

Notice of the AGM


Notice of Annual General Meeting Notice is hereby given that the Annual General Meeting (the “Meeting”) of THE NYSTAGMUS NETWORK (the “Charitable Incorporated Organisation or CIO”) will be held at The Millennium Lounge, The Principality Stadium, Westgate St, Cardiff CF10 1NS on Saturday 28 September 2019 at 15.20. AGENDA The Treasurer will take any questions … Continue reading Notice of the AGM

13% of MS patients have acquired nystagmus


In a report presented this summer, 15 of a sample of 116 patients with Multiple Sclerosis were found to have Acquired Nystagmus. Ocular manifestations often present first in multiple sclerosis September 6, 2019 COEUR D’ALENE, Idaho — There is a high frequency of ocular manifestations in patients with multiple sclerosis, both at onset and during the … Continue reading 13% of MS patients have acquired nystagmus

A survey on glaucoma and nystagmus


You can support the University of Cardiff team to develop new diagnostic testing for people with nystagmus by taking their survey today. “The Research Unit for Nystagmus at Cardiff University is looking for people with nystagmus to take part in a survey that aims to further our understanding on the number of people with nystagmus … Continue reading A survey on glaucoma and nystagmus

Going to uni with nystagmus


Today’s guest post comes from Ella, author of the blog, Life of Ella. Ella is a First Class Honours graduate and a civil servant. She also happens to have nystagmus. Some people with nystagmus might think that university is not for them, but Ella is here to share her experiences of support and success. I … Continue reading Going to uni with nystagmus

Parent Power and networking lunch in Southampton


Parent Power, funded by the National Lottery Community Fund The Nystagmus Network invites parents and carers to attend the first of our Parent Power education workshops. Venue:      Southampton Sight, 3 Bassett Avenue, Southampton, SO16 7DP Date:          Saturday 12 October Time:         10am to 2pm The aim of the project is to empower parents and carers with legally based information … Continue reading Parent Power and networking lunch in Southampton

Manchester meet up


The next meeting of our new North West nystagmus network will take place on Saturday 7 September in central Manchester, 10am to 12 noon. Nystagmus Network trustee, Marie Turnbull will once again be your host . We look forward to welcoming back the families and adults who came along last time and to seeing some … Continue reading Manchester meet up

Special Tai Chi sessions for the Nystagmus Network


Huge thanks go to Aly for organising some very special Tai Chi sessions to help raise money for the Nystagmus Network. Tai Chi is amazing if you have nystagmus. It can help with spacial awareness, balance, co-ordination and so much more. Even if you don’t have nystagmus yourself, please go along to this fabulous fundraiser … Continue reading Special Tai Chi sessions for the Nystagmus Network

Orthoptist, Optometrist or Ophthalmologist?


With all those job titles beginning with ‘O’ it can be a bit confusing trying to work out who does what at the eye clinic. Here’s a handy guide from the British and Irish Orthoptic Society, BIOS: Orthoptist, Optometrist or Ophthalmologist? Aside from Orthoptists, there are a number of other professions working in eye health. … Continue reading Orthoptist, Optometrist or Ophthalmologist?

The Market-ness of the Market Place – building concepts through everyday experiences


A guest post by Gwyn McCormack, Director of Positive Eye: delivering training, courses and a unique product range to support the educational needs of children and young people with vision impairment Gwyn will deliver a ‘Supporting literacy and learning at home using everyday experiences’ workshop at our Open Day on 28 September. Sighted children develop … Continue reading The Market-ness of the Market Place – building concepts through everyday experiences