Eye Drops and Medication During Ramadan


During the Holy month of Ramadan, the Muslim community take part in fasting. This means that from sunrise to sunset, there is no eating or drinking (not even water). How does Ramadan affect eye medication? During Ramadan people often stop putting in eye drops (such as Glaucoma medication, antibiotic drops and lubricant drops) as it … Continue reading Eye Drops and Medication During Ramadan

Nystagmus Network supporters invited to celebrate Captain Sir Tom’s achievements in special fundraising event


New fundraising initiative over Captain Tom’s birthday weekend of Friday 30 April to Bank Holiday Monday 3 May to celebrate his life and amazing achievements   Captain Tom 100 invites people all over the world to take on a challengebased around the number 100 to raise funds for charity  Following the outpouring of heartfelt messages since … Continue reading Nystagmus Network supporters invited to celebrate Captain Sir Tom’s achievements in special fundraising event

Nystagmus Network runners to be part of world’s first 100,000 person marathon


50,000 runners to take on world’s biggest virtual marathon on Sunday 3 October with 50,000 runners to tackle the traditional London Marathon route on the same day With the results of the 2021 Virgin Money London Marathon Ballot announced recently, the Nystagmus Network has 3 places for anyone who wants to raise crucial funds while … Continue reading Nystagmus Network runners to be part of world’s first 100,000 person marathon

Sue’s at VIEW


The annual VIEW conference for QTVIs (Qualified Teachers of Visually Impaired children and young people) is taking place last week and this – virtually. The Nystagmus Network attends every year. In fact this was the last event Sue attended in 2020 before lockdown. Sue’s virtual presentation on nystagmus in the classroom is exciting lots of … Continue reading Sue’s at VIEW

What is nystagmus?


For a back to basics, plain English guide to childhood nystagmus, visit the new Gene Vision website. The Nystagmus Network contributed to the content to make sure that people diagnosed with nystagmus, their families and the people who care for and support them would have a clear understanding of the condition. Visit the ‘nystagmus for … Continue reading What is nystagmus?

Notes from the February Forum for adults living with Acquired Nystagmus and Oscillopsia


Thank you to everyone who joined us for the Nystagmus Network February Forum for Adults living with Acquired Nystagmus and Oscillopsia. Patsy’s story, a case study of AN and Oscillopsia Our lovely volunteer, Patsy introduced the work she has been doing, putting together a case study of her AN and Oscillopsia journey to support the … Continue reading Notes from the February Forum for adults living with Acquired Nystagmus and Oscillopsia

Notes from the February Forum for adults with congenital nystagmus


Thank you to everyone who joined us for the Nystagmus Network February Forum for Adults living with Congenital Nystagmus. ECLOs Ian, our Information Support Officer made sure that everyone knew what an ECLO (Eye Clinic Liaison Officer) is, how they can help support you and where to find them. Please contact Ian at ian.springett@nystagmusnet.org if … Continue reading Notes from the February Forum for adults with congenital nystagmus

Notes from the February Parents’ Forum


Thank you to everyone who joined us for the Nystagmus Network February Parents’ Forum. Homeschooling Although it was Half Term for some, homeschooling was mentioned quite a bit. We talked about requesting modified print versions of online work to reduce the amount of screen time children are exposed to during this time. We loved the … Continue reading Notes from the February Parents’ Forum

Circadian Therapeutics Sleep Health Survey


Circadian Therapeutics are seeking vision-impaired individuals between 18 – 70 years to participate in a research project exploring experiences of sleep and daily rhythm disruption. In partnership with the Blind Veterans UK, Circadian Therapeutics is running a survey to identify sleep and circadian disruption experienced by vision impaired individuals. The purpose of this work, first … Continue reading Circadian Therapeutics Sleep Health Survey

Looking forward to 20 June


We’re launching something BIG for Nystagmus Awareness Day 2021 But first, a question. Who’s your favourite children’s author? David Walliams? Eva Ibbotson? Onjali Rauf? Eoin Colfer? Malorie Blackman? Adam Blade? J K Rowling? Jacqueline Wilson? Please contact us with the name your child’s or your favourite children’s author THANK YOU