Information and Support – Nystagmus Network

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

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

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.

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.

Hands raised in the air in silhouette against a blue sky.

Volunteer for us!

The Nystagmus Network is a little charity with very big ideas. Do you want to be part of our exciting journey?

If you have the skills and time to give for just a couple of hours a month to support the work of the Nystagmus Network, we’d love to hear from you. Whether you’d like to provide IT support, flex your digital skills, help with fundraising, manage our online shop and post out orders or organise some local get togethers, please get in touch. Thank you.

Email us at [email protected]

Nystagmus awareness at work

A guest post

After my first proper job following university, I decided to ‘come out’ about my disability and support needs. I was worried this might make me stand out for the wrong reasons, but felt it was important to be my own advocate.

It was a positive move and I get lots of support and adaptations at work in my new job.

But, with remote working, I felt I was ‘back in the closet’.

Homeworking has been a revelation. It suits me so much better. There’s no commuting and the stress of getting my train, more screen breaks and no setting up the desk each day. I’m all set up at home with lots of natural light and my big screens. No hot desking!

The downside is that people are no longer seeing me every day, passing my workstation. On Zoom they don’t notice my eye movements, my head turn, they can’t see the large print papers on my desk or my wide screens. People have forgotten I have nystagmus.

I’ve found it something of a demeaning experience to have to go through it all again with my manager and my teammates, but the positive outcome for me is that home working is considered a reasonable adjustment and is now written in to my contract.

My message is ‘don’t let people forget about us’. We’re not working for their convenience. Things can still fall through the cracks. I want to work in an environment that lets me shine.

Do you have a nystagmus at work story you’d like to share for Nystagmus Awareness Day 2022? If so, please email us at [email protected]

Download our guide to Nystagmus and Employment here

A thank you card from the Nystagmus Network showing an image of 2 boys taking part in a team building exercise.

It’s so nice to be appreciated

In 2021 the Nystagmus Network supported 591 people to come to terms with nystagmus, to find the support and information they needed. We’re even busier in 2022, as more and more people find their way to us and join the virtual nystagmus community. It’s so rewarding when the people we support show us their appreciation.

Here are just some of the lovely things that people are saying about us:

About our Parent Power workshops: “Thank you for setting up today’s workshop. It was really helpful.” … “Thank you – it was wonderfully informative and extremely helpful. Can highly recommend.” … “Thank you so much – it was incredibly insightful and thoroughly worth the time.”

About our monthly forums: “I’ll look forward to the forum next time. It’s nice to keep in touch. It’s part of what makes the Network special.” … “It has been wonderful to hear/speak/learn from all of you and your experiences, to speak to parents with similar challenges. I look forward to attending future parent meetings. Thank you for setting this up!”

About our Information and Support Line: “Huge shout out to the Nystagmus Network for the most informative chat about congenital and acquired nystagmus. Your guidance has been invaluable.” … “Thank you so much for your invaluable advice. Please keep doing what you do.”

About our information documents: “We’re quite early on in learning about our son’s nystagmus and how it affects him and the Nystagmus Network has been so helpful so far. The resources available have explained so much.” … “ I am a big fan of your resources and have found them really helpful.” … “I’ve just read the PDF ‘Nystagmus and benefits’ and found it really interesting, thanks for summarising a lot of info in an ‘easy to understand’ way.” … “. I just wanted to let the charity know that I’ve found the PDF documents really useful so thank you.”

About our Facebook page: “Thank you for all your advice over the last few years, even though it’s taken me nearly 40 years to realise my condition. If only I had known back there I would have been in my teens and the help would have been great. You do a great job getting it out there.” … “I just made my first donation for research! I have AN and Oscillopsia. Fortunately, 12 weeks of neuro rehab with specific eye coordination exercises has helped me be able to walk and jog on the beach near my home. Each mile accomplished is taken with gratitude for the work and support that Nystagmus Network brings. Thank you for all you do!” … “Thank you for the excellent work carried out by the Nystagmus Network. Through it, I’ve learned more about how to live well with my condition in the last few years than I ever thought possible!”

On our Acquired Nystagmus away weekend: “We had a lovely time last weekend and I cannot thank you enough for all the work you put in to make this event so successful.” … “It was so lovely to meet you all in Bath and, whilst tiring for us sufferers, was a great opportunity to chat on a more personal level. We had a great connection and got on so well. I felt like we could see (and appreciate) our individual characters, despite the very troublesome nystagmus. Thank you so much for arranging this.”

The front cover of the BNystagmus Network guide to nystagmus and benefits.

A new guide to nystagmus and benefits

From our monthly virtual support networks to our free benefits advice, the Nystagmus Network is always here for you.

As we emerge from the pandemic, we’re all feeling the financial pressure of increasing fuel prices, the rise in the cost of living and, for some, job insecurity. So, we’ve put together a new guide to benefits.

Alongside our bespoke booklet on DLA, PIP and Nystagmus by volunteer Mike Hughes, a professional benefits adviser and member of the Greater Manchester Welfare Rights Advisers Group (GMWRAG), we now offer a Benefits Guide, providing information on a wider range of means-tested and non-means-tested benefits which may be available to someone living with nystagmus. The new guide was compiled by our staff team, under Mike’s professional guidance.

Category: Information and Support