Marsha wears a floral top and a denim jacket. She is standing in a garden by a hedge.

Marsha’s message for Nystagmus Awareness Day 2024

Thank you to Marsha de Cordova for taking a few moments out of her busy schedule to celebrate with us Nystagmus Awareness Day 2024 in our Ruby Year.

Watch Marsha’s message on our YouTube channel here

A desk with an open laptop, plant and coffee cup.

Understanding your experiences of nystagmus

You are invited to participate in a research study titled “Understanding the Experiences of Individuals with Eye Movement Disorders.” This study aims to explore the lived experiences, challenges, and perspectives of individuals living with eye movement disorders.

The Principal Investigators are Dr. Brian Le Lay CUNY School of Professional Studies, City University of New York and  Dr. William Keith, University of Wisconsin-Milwaukee

By sharing your experiences, you can contribute valuable insights that may help improve awareness, treatment options, and overall quality of life for individuals living with these conditions.

If you agree to participate, you will be asked to complete an initial online survey that will ask you about your background, vision, and general experiences related to your eye movement disorder.

Follow his link to consent to take part

 

The front cover of the Nystagmus Network guide to nystagmus and the early years.

Nystagmus and the early years

The Nystagmus Network is proud to launch a new guide to nystagmus and the early years. Written for new parents and carers where a baby is newly diagnosed with nystagmus, this digital guide talks you through what to do, where to find help and how to support your child’s development from 0 to 5 years.

Nystagmus and the Early Years is the latest in a whole range of information guides for parents and carers, all available to download for free from our website in PDF and Word doc format. Plain text print versions are available on request to [email protected]

Reviewing the new guide, Nystagmus Network trustee and chair of the charity’s Support Committee, Kathryn Swanston, said: “Congratulations on another excellent resource. Well done to all involved in putting this together. The addition of the parent’s perspective is great.”

Download your copy of the new early years guide here

 

A woman supports a child with music and movement exercises.

Stress busting workshop for parents and carers

Parents’ online get together, November 29 2023 7-9pm – guest speaker from CONTACT*

At our next online get together for parents and carers we will be joined by a speaker from CONTACT who will deliver a workshop on  Wellbeing Workshop for parents and carers

Here’s what the workshop is about:

Stress can be a huge factor for families. What causes you stress and how do you cope with it?

This online workshop will give you the opportunity to hear other parents’ experiences, learn new strategies and share as much or as little of your story as you wish. We will explore ways of reducing your stress by improving the areas that could help you feel more positive and able to get the most out of life.

After the session you will: 

• understand clearly what stress is and how it affects you 

• learn about coping mechanisms and other people’s coping styles 

• identify new ways of coping with stress and reducing your stress levels

• be motivated to try new stress busting ideas until you find ones that suit you

• improve your wellbeing

To express your interest in joining the session on Wednesday 29 November from 7 to 9pm, please email us at [email protected]. Thank you

*CONTACT is the charity for families with disabled children

A card featuring the Nystagmus Network logo and an ice cream cornet and the text 'please take a moment to nominate us'.

Please nominate us to win a £1,000 donation

Please take a moment to nominate the Nystagmus Network for the chance to win a £1,000 donation. That’s enough to pay for a year’s supply of nystagmus information leaflets for families across the UK.

The competition is being run by the Benefact Group.

Please use the link below to nominate us. Thank you!

Nominate Nystagmus Network here

A postcard with details of the big nystagmus meet up Manchester featuring the Manchester bee.

The big ‘nystagmus’ meet up – Manchester

Saturday 23 September, 10am to 3pm

You are warmly invited to join Nystagmus Network staff and trustees for our next in person event – the big nystagmus meet up, Manchester.

We shall be at The Limelight, a fabulous community hub in Trafford, just a short tram or bus ride from Piccadilly station.

We can promise you some great guest speakers, information and advice on all aspects of living with nystagmus including local services, a Q+A session with clinicians, and, most importantly of all, the chance to meet other parents and people living with nystagmus, just like you.

For more information and secure your place, please contact us at [email protected]

This event is funded thanks to a Magic Little Grant from players of the People’s Postcode Lottery.

Sue wears a Nystagmus Network T-shirt and sits at her exhibition table.

Sue at VIEW

Nystagmus Network’s Sue Ricketts travelled to Birmingham last week for the annual conference of VIEW, the national body representing Qualified Teachers of Visually Impaired children and young people (QTVIs).

Delegates were treated to presentations on the latest thinking on special educational teaching and support, including responses to the recent SEND reforms.

Sue was part of the exhibition, ensuring that teachers and support staff had all the resources they needed to signpost families to the Nystagmus Network for support and information. There was overwhelming praise for our digital guides, with ‘Wobbly Eyes‘, the booklet for young children, again proving the most popular, followed closely by ‘Nystagmus and Driving‘ and Sue took the opportunity to introduce our latest publication, the Nystagmus exams guide.

There was lots of interest, too, in our online book shop, featuring ‘Can I tell you about nystagmus?’ by Nadine Neckles and the newly published ‘She will never…’ by Amanda Harris.

In the run up to Nystagmus Awareness Day on 20 June, with our 2023 theme ‘Share your nystagmus story’ we are making available lesson plans and Powerpoint presentations for teachers and their pupils. We hope that these resources will not only raise awareness of nystagmus in schools but also help children and young people living with nystagmus feel better understood and more included.

Becky is wearing a yellow coat and stands beside a table with laptop and phone.

Parents and carers get together

Parents and carers of children and young people with nystagmus are warmly invited to our first Parents’ Get Together of the year. We are delighted to share that Becky Hyams will be joining us as our special guest. Becky is a second year university student, studying Advertising and Digital Marketing. She has nystagmus herself. She will be sharing her experiences of school, university and also how she wants to raise awareness of disability to help educate others.  Becky has created her own blog and social media accounts, ‘beckys.blurred.perspective’ to help achieve this. 

If you’d like to receive an invitation to the get together on Tuesday 21 February from 7.30pm, please email us at [email protected]

A poster for The Great Winter Get Together, #PlacesForConnection, 16-29 January 2023, with graphic images of a cuppa, buildings and a screen.

A winter warmer for darker days

We’re taking part in the #TheGreatGetTogether – please join us

We are hosting two online get togethers this month.

For people living with Acquired Nystagmus our online get together takes place on Wednesday 18 January from 5pm.

For people living with Congenital Nystagmus our online get together is on Thursday 19 January from 7pm.

Please join us for a chat and to brighten up a dark, wintry evening.

Everyone welcome

If you’d like to join in, please email us at [email protected] for details.

The logo of Glaucoma Awareness Week 2022

Glaucoma Awareness Week 2022

The Nystagmus Network is marking Glaucoma Awareness Week 2022, the UK’s national week to raise awareness of glaucoma. The theme for this year is ‘Put your sight in the spotlight’, and we are supporting the initiative by encouraging everyone to have a regular sight test.

Glaucoma is the name of a group of eye diseases that damage the optic nerve, responsible for transferring visual information from the eye to the brain. Damage to the optic nerve can result in sight loss and even blindness. Over 700,000 people in the UK have glaucoma, and half of them don’t know they have it. Anyone can develop the disease, though some people are at higher risk, including those with a family history of glaucoma. The disease is fairly rare below the age of 40, but the risk rises over the age of
40 and continues to increase as we get older. One in 10 people aged 75 or over are affected by glaucoma. People of African-Caribbean origin are also four times more likely to develop the disease than people of European origin.

Glaucoma can be symptomless, meaning a large percent of the peripheral vision can sometimes be lost without even noticing, due to the brain filling in any gaps in vision. For most people, the signs of glaucoma are first spotted at a routine eye test.

Glaucoma UK’s Chief Executive, Joanne Creighton, says“This Glaucoma Awareness
Week, we want people to put their sight in the spotlight by encouraging them to get their
eyes regularly tested. With an ageing population and modern technology making earlier
detection possible, more and more of us will find ourselves affected by glaucoma. If you
are living with or have recently been diagnosed with the disease, Glaucoma UK is here to
support you.”

For more information about this year’s Glaucoma Awareness Week, visit www.glaucoma.uk/glaucoma-awareness-week or join the conversation on social media using #GlaucomaAwarenessWeek.