Nystagmus Network

05/09/2026

Christmas Card Competition

Looking for a calm activity for the children to do this weekend? Why not enter our Christmas card compeition?

Our fabulous children's Christmas Card Competition, in collaboration with is open for entries until Wednesday 30th September. Allow your child's imagination to escape to the land of magic and all things Christmassy…

The competition is open for the following age categories:

0-5
6-11
12-16

The Nystagmus Network team and Charlotte from will choose the designs for this year’s Christmas Card set, available to buy online by the end of October. For every card sold, 50p will be donated to Nystagmus Network.

Feeling festive? Here's how to enter:
Send a scan or photograph of your design to: [email protected] by Wednesday 30th September
Please create your design in a portrait format, either in A4 or A5
Don’t forget to include the child’s name and age.
Please only use details that you are happy to be shared on social media or in printed media by the Nystagmus Network or .
Keep hold of your original design in case you are selected and we need to scan your artwork for reproduction.

We can't wait to see your designs!

04/09/2026

Friday Fundraiser - Simon

Simon is running the Royal Parks Half Marathon this October. Simon's son, Patrick has nystagmus.

'Thanks to Nystagmus Network, we've been able to better understand how to support Patrick, advocate for him, and help him thrive with a visual impairment. They've walked alongside us when we needed it most.'

Simon and his supporters have raised over £1,400 already and we really could not be more grateful.

03/09/2026

Wills information Webinar

Join us on Tuesday 29 September online at 7pm to find out more about writing your Will and why it's so important.

The event will be led by our fabulous Will writer, Amanda. Amanda is a qualified lawyer, member of The Society of Will Writers, and member of the Nystagmus Network community.

“I have congenital nystagmus and I wish the Nystagmus Network had been around when I was a child. As a Will writer I am proud to support this wonderful charity.” - Amanda

What will the information session include:
Wills & Trusts in Wills

What key things should I consider when making a Will?
The appointment of executors and trustees in a Will
The appointment of a guardian in a Will
Fact checking about writing your Will.
There will also be an opportunity to ask questions of a general nature about Wills.

Leave a Legacy

Did you know you can write your Will for free with our Free Will writing service?

Amanda offers our supporters a free Wills to anyone who lives a gift in their Will to Nystagmus Network.

Your legacy will help transform lives for years to come.

We thank Amanda for this kind support.

To regsiter for this event, please email: [email protected]

01/09/2026

The Dirty Work

The Dirty Work by is a theatre show about visual impairment and magic. Like a magic show but the tricks are the way Jo performs, passes and navigates her way through a sighted world. The tricks she pulls as a visually impaired person to appear more sighted than she is, or get what she needs.

Jo is a visually impaired artist with albinism and nystagmus. Her work is about how we all see the world differently and how this difference can be celebrated.

Each performance includes Audio Description, a Touch Tour and a VIP Access area (for our VIP’s - Visually Impaired People!)

01/09/2026

Back to School

As the start of a new academic year approaches, we want all children with nystagmus to have a positive educational experience. Which adapatations have made a big difference to your child's learning?

We have a selection of downloadable guides packed with information on how best to support your child as they navigate school.

Have a look at our guide to nystagmus in the early years:
https://buff.ly/FPsevrl

or nystagmus in education:
https://buff.ly/xeBkCnw

We have a guide for teachers too:
https://buff.ly/c6xBOUx

28/08/2026

Disappointed to miss out on a Royal Parks Half Marathon place? We have so many other fantastic runs to choose from! How about the Southampton Half Marathon, this October?

Take on a city race day starting and finishing by Saint Mary’s Stadium. The Southampton Half & 10K offers smooth, well-supported running on city streets with a lively stadium backdrop, perfect for chasing a PB or enjoying an autumn challenge with friends and family.

Get in touch today: [email protected]

28/08/2026

Meet Connor

Connor was lucky enough to get our last Royal Parks Half Marathon place, earlier this week. Connor has nystagmus himself and is keen to raise awareness of the condition that directly affects him.

Thank you Connor for choosing to run for us. We'll be cheering you on!

https://buff.ly/H1xGpJf

Help Connor Lindsay raise money to support Nystagmus Network

27/08/2026

Understanding experiences of NHS Eye Care – A Survey from The Eyes Have It Partnership

The Eyes Have It (TEHI) is a partnership of the Macular Society, Fight for Sight, RNIB, Association of Optometrists and Roche Products Ltd. Roche has funded the activities of the partnership.

This survey has been developed by TEHI partnership to understand the experiences of people living with eye health conditions or sight loss, and how they access NHS eye care. Your feedback will help to identify what is working well and where improvements are needed.

We welcome responses from people living with an eye health condition or sight loss, as well as from carers, family members, or others who support someone with these conditions. If you are responding on behalf of someone you care for, please indicate this in Question 2 and answer the survey based on your experience of providing care or support.

Follow the link to take part in the survey.

https://buff.ly/xO3XVxT

26/08/2026

A Level Success for Katie.

Katie is 18 and has had nystagmus since birth. Day-to-day her main symptoms are extreme fatigue and difficulty with depth perception and peripheral vision; modern technology has helped her enormously at school and home. Katie has always been fiercely independent and worked hard at school with the support of some great teachers and TA's and has just gained top grades (As and A*s) in A-levels in Maths, Biology and Chemistry.

Katie is following her dreams after securing a very competitive degree apprenticeship with AstraZeneca, which she will start in September. She will be employed as a Laboratory Scientist in biopharmaceutical research and development at their headquarters (the DISC) on the Cambridge Biomedical Campus, working 4 days/week and completing a fully-funded degree in Bioscience 1 day/week.

Katie will be the first visually impaired employee in this new building. Her family are super proud of her hard work and achievements and are grateful for the help of Dorset Council's vision support services, her TAs and teaching staff, and the opportunities that Katie has had to meet others with nystagmus via the Nystagmus Network.

AstraZeneca and Manchester Metropolitan University have provided a warm welcome, putting adjustments and support in place ready for Katie's next exciting chapter.

Huge congratulations to Katie and her family.

24/08/2026

We are delighted to share news of an exciting new project launching this September: the Best Start for Young Children with Nystagmus.

This is a two year grant funded project to ensure parents and carers of children with nystagmus can secure the best start in life for their children. This will mean that children with nystagmus can reach their full potential at school and thrive, leading fulfilled and happy lives and contributing to society.

It will specifically focus on:
Providing training about rights and support services
Equipping parents with advocacy skills
Developing targeted resources for early intervention
The project is specifically aimed at children from 6 months to the end of Reception year. Due to funding restrictions it is open to residents in England only.

We are seeking to create a Community Reference Group (CRG). This will be instrumental in steering the project. Members of the group will share their insights, critique resources that are created and fundamentally, be a voice for young children living with nystagmus.

We are looking for:
Approximately 5 families with a child between 6 months and 5 years
At least one family with a child in KS1 or KS2
A commitment to 2 online meetings a term
A passion for championing the best support for young children with nystagmus.

To be a part of our CRG, please send an expression of interest email to: [email protected] and include the following information:

The age of your child
The county you live in
Your ethnicity
A brief overview about your child and your experiences so far, particularly focusing on: childcare and the support you have received from a QTVI and or SENDCo.

We look forward to hearing from you.