Homeschooling and nystagmus


A Guest Post by author and nystagmus Mum, Nadine Neckles So the world has turned on its head and what we once considered normal and safe has morphed into anxiety inducing, mask wearing, groundhog day feeling ‘normality’. COVID-19 has changed a lot of what we do and how we do it, including how and where … Continue reading Homeschooling and nystagmus

Nystagmus in lockdown


In this Guest Post, Neil writes about his experiences of lockdown as a visually impaired person. I’m registered partially sighted and diagnosed with nystagmus and ocular albinism from birth. Both conditions will never improve, but fortunately will never get worse either, so I’m told. Basically, I’m extremely short sighted and on a good day (with … Continue reading Nystagmus in lockdown

Fight for Sight launches survey on impact of Covid-19 on people with eye conditions


Eye research charity Fight for Sight has launched a survey to gather broader insights into the personal impact that Covid-19 is having on people with sight loss and eye conditions. The charity is inviting those affected by sight loss or an eye condition to participate in the survey, to help its campaign on behalf of … Continue reading Fight for Sight launches survey on impact of Covid-19 on people with eye conditions

Sue’s still knitting!


From now until 26 May, this is Sue’s daily schedule: 45 minutes yoga 8 hours working at the Nystagmus Network 1 hour walking her dogs Then carry on with her Two Point Six Challenge for the Nystagmus Network: knitting 26 mascots by 26 May. You can sponsor Sue here. To pre-order your nystagmus 2.6 challenge … Continue reading Sue’s still knitting!

Sue’s Two Point Six Challenge


Sunday 26 April 2020 was to have been the date of the London Marathon with runners raising £millions for UK charities. The Nystagmus Network’s runner, Adam, is still training to run in the postponed race in October. Meanwhile, the organisers have launched The Two Point Six Challenge to help save the UK’s charities by giving … Continue reading Sue’s Two Point Six Challenge

Your food shopping experience


How are you getting on with shopping for food? What are your experiences of queues, social distancing, assistance available in store? Have you managed to secure online delivery slots? The Nystagmus Network continues to lobby alongside other bigger VI charities (please see this recent Daily Telegraph article) for the rights of people with nystagmus and … Continue reading Your food shopping experience

Nystagmus Network staff under lockdown


Nystagmus Network staff team members, Sue, Sara and Debbie are all adjusting to the current pandemic and a slightly different way of doing things. Though they all usually work from home, some things have changed. Debbie is currently furloughed and spending important time at home looking after her family and home schooling her daughters. Sara … Continue reading Nystagmus Network staff under lockdown

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

Sara on the NHS front line


Sara works hard part time as Information Support Officer with the Nystagmus Network, but did you know she also works on the NHS front line? She’s even working today on her son’s birthday. Her role is with a busy doctors’ practice. Sara says: “I manage a team of 10 receptionists and support all the clinicians … Continue reading Sara on the NHS front line

Does nystagmus or ocular albinism affect my immunity?


Lots of you are asking us this question and some of you have received notification letters from the government. We asked for expert clinical advice and received the following statement: “IN (infantile nystagmus) or OA (ocular albinism) in isolation are not associated with compromised immunity. “There are some syndromic forms of albinism that are associated … Continue reading Does nystagmus or ocular albinism affect my immunity?