Category: Living with nystagmus

Acquired nystagmus, MS and driving

An article recently published online by Everyday Health, discusses the effects of acquired nystagmus on an individual’s ability to drive. The author is an American citizen, living in New York State, but her description of the way in which nystagmus is affecting her sight will resonate with a lot of people.

For guidance on nystagmus and driving in the UK, please see our free to download publication, by clicking here.

You can read the article, entitled “Driving: A Form of Freedom MS Hasn’t Taken From Me Yet”, here.

ASK THE EXPERT: an expert on sight and driving will be with us at Open Day on 28 September. Delegates will be able to ask questions about nystagmus, driving and the DVLA sight test.

A new RNIB guide to outdoor play

The Royal National Institute for the Blind (RNIB) has recently released a new guide, Messy and Muddy, which explores outdoor play for children living with sight loss. The new guide offers advice for encouraging a child with vision impairment to get ‘messy and muddy’ and how to support natural development in a safe, accessible and fun way.

“Exploring outside helps children develop mobility and independence skills; it can provide tangible contexts for learning about literacy and numeracy; it helps them face challenges and take risks; importantly, it provides the perfect opportunity to have fun with friends and stay active.”

Download the free guide, here.

Introducing Neill

Neill Mison is an IT consultant who has recently rediscovered his love of and talent for painting and drawing. Neill now styles himself as ‘the visually impaired artist’ and is enjoying some considerable acclaim for his impressionist style. The subtle colouring and fine detail of his paintings is particularly surprising since Neill has ocular albinism and nystagmus.

Neill is also a keen runner. He recently completed a Nottingham fun run, in his Nystagmus Network T-shirt, as a warm up to his part in the Manchester marathon this weekend.

You can sponsor Neill, here.

You can read more about Neil, his vision and his art, here.

Front cover of the book 'Can I tell you about nystagmus?'.

Can I tell you about nystagmus?

The Nystagmus Network is delighted to share news of the launch today of a brand new book about nystagmus.

Written by Nadine Neckles, the book looks at nystagmus from a child’s point of view and provides insights for parents and professionals alike.

Nadine is a friend of the Nystagmus Network and previously contributed an article about her daughter’s nystagmus for our fortnightly newsletter, Focus, in June 2017. Read her article in full by clicking here.

Since then she has continued to parent her daughter, who also has Chromosome 18q-, whilst writing her blog, Caring in the Chaos.

Meet Nadine at Open Day

Nadine will be joining us at Open Day 2019 on Saturday 28 September. Delegates will have an opportunity to meet her and chat with her about bringing up a child with nystagmus and purchase a copy of the book, signed by the author.

Nystagmus Network endorsement

The Nystagmus Network’s Sue Ricketts has provided an endorsement for the book:

“Can I tell you about Nystagmus … highlights a much misunderstood condition. Seen from the family’s perspective, the description of the way nystagmus affects the daily life of a young child will be informative and reassuring for other parents.”

Order your copy today

The book is available to order directly from the publishers. Please click here for details.

Special offer for members

Members of the Nystagmus Network can purchase the book at a generous 25% discount. Please use the voucher code in your special member email.

Free copies giveaway

The first THREE new members to sign up today will receive a copy of the new book ABSOLUTELY FREE as part of their membership package.

Sign up for membership here.

A lesson in nystagmus

The Nystagmus Network has a free to download lesson plan about nystagmus. Designed for use in schools and preschools on Nystagmus Awareness Day or any other day of the year, the aim is to raise awareness of nystagmus and its wider effects and to help a child with nystagmus feel more included in the classroom.

Download your copy here.

Raising nystagmus awareness in 2019

The Nystagmus Network works tirelessly to raise awareness of nystagmus, not only on Nystagmus Awareness Day but throughout the year.

Why raise awareness?

We firmly believe that the more people who know about nystagmus and understand its effects, the better life will be for the adults and children affected by the condition.

New for 2019

We’ve revised and updated two free to download PowerPoint presentations.

Introducing Nystagmus or Wobbly Eyes

This presentation is aimed at children in school or pre-school and explains how congenital nystagmus affects young children. Click the link to download Introducing Nystagmus or Wobbly Eyes

Introducing Nystagmus

This presentation is designed to be shown on a screen in reception at a workplace, in clinic or in a hospital waiting room and explains both congenital and acquired nystagmus and how these 2 conditions affect children and adults. Click the link to download Introducing Nystagmus

Manchester nystagmus network

The next meeting of our new North West regional group will take place on Saturday 26 January in Manchester. Nystagmus Network trustee, Marie Turnbull will once again be your host and this time she will be joined by our volunteer Education Advocate, Frances Lilley.

We look forward to welcoming back the families and adults who came along to the first meeting in November.

New members are very welcome. For details, please contact us today.

Nystagmus, the way we see it

If you’ve ever wondered how a person with nystagmus sees or how the condition affects their sight, listen to Richard, Harriet and Will explain in our video.

You can show our video to anyone or use it, completely free of charge, for training purposes. All we ask is that you let us know.

Nystagmus, the way we see it – watch here.