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Night in with the Nystagmus Network 


This event is for members, invited guests and VIPs only and includes:
  • networking with fellow Nystagmus Network members, trustees, researchers and VIPs
  • a recipe for the Nystagmus Network cocktail (with non alcoholic version)
  • a 3 course set menu for you to prepare at home, buy as a ready meal or order in
  • entry to the Nystagmus Network virtual treasure hunt
  • our guest speaker, Mike Larcombe
What better way to round off virtual Open Day 2020?
Book here for Night in with the Nystagmus Network

Booking for the MEMBERS ONLY parts of Open Day continues. Don't forget to book your place for the Night in with the Nystagmus Network and the AGM and your phone appointment with one of our advisers.


You can also book now for the full schedule of inspirational and informative presentations, including all the nystagmus research news.
Book for all Open Day presentations here

Joanne Roughton-Arnold


The voice of Nystagmus Network member, acclaimed soprano and Open Day 2020 keynote speaker, Joanne Roughton-Arnold features in the inspirational documentary, Rising Phoenix, a Netflix production charting the history of the Paralympic Games through the personal stories of some of the sports stars themselves. 

Joanne says it was "a privilege to be part of this immensely powerful film".


Don't miss Joanne on 3 October
Book for all Open Day presentations here

Telephone appointments for education advice

If you would like a one-to-one telephone consultation with Frances Lilley, our volunteer education advocate, about special education support provision for your child, please book a timed appointment.

Places are limited and for members only.


Saturday 3 October from 9.30am
Book your appointment here

Telephone appointments for benefits advice

If you would like a one-to-one telephone consultation with Mike Hughes, our volunteer benefits adviser, about nystagmus and DLA or PIP applications or appeals, please book a timed appointment.

Places are limited and for members only.

Saturday 3 October from 10am
Book your appointment here

All other Open Day presentations 


To enjoy all the virtual Open Day presentations, please register to receive your programme containing links to all the sessions, which will include:
  • keynote speaker, Joanne Roughton-Arnold
  • author, Claire Entwistle
  • all the UK nystagmus research updates
  • SEND news for England and Wales
  • building resilience in young people with nystagmus
  • what to expect from a sight test with a High Street optometrist
... and lots, lots more

Booking is now OPEN!
Book for all Open Day presentations here

Parent's Forum on Open Day

A zoom meet up led by Nystagmus Network staff and volunteers. Your chance to meet up and share notes with other parents and carers of children with nystagmus.

Saturday 3 October at 2pm
Parents sign up here

Adults' Forum - congenital nystagmus


A zoom meet up led by Nystagmus Network staff and volunteers. Your chance to meet up and share notes with other adults living with congenital nystagmus.

Saturday 3 October at 3pm
Adults with CN sign up here

Adults' Forum - Acquired Nystagmus


A zoom meet up led by Nystagmus Network staff and volunteers. Your chance to meet up and share notes with other adults living with acquired nystagmus.

Saturday 3 October at 4pm
Acquired Nystagmus sign up here

Annual General Meeting


The AGM of the Nystagmus Network takes place at 5pm on Saturday 3 October. This is an online event. Members wishing to attend and exercise their right to vote are invited to reserve their place now. Before the meeting, you will receive minutes of the last meeting together with a zoom link and instructions to join the AGM.

Saturday 3 October at 5pm
Book here for the AGM

Trustee and volunteering opportunities

Are you looking for a new opportunity to give your energy, time, skills and talent to support a small charity?

The Nystagmus Network is looking for people who would like to help the work we do as a volunteer, or join us as a Trustee to guide and direct the charity’s work.

The skills, talent and experience we would be interested in are:

  • Fundraising
  • Volunteer Management / Networking
  • Corporate Law
  • Clinical Practice
  • IT and Web Design

For people considering offering their services as a potential Trustee, the minimum time commitments are one full Saturday four times a year, an evening or daytime phone call every 6 weeks, attendance at the annual Open Day and support for Nystagmus Awareness Day. Trustees have particular legal responsibilities under charity law.

If you have time to give us, then please drop us an email at trustees@nystagmusnet.org with a brief summary of how you would like to get involved and the skills and experience you have to offer. We will then be in touch.

We welcome interest from people with and without nystagmus.

Apply here

Ask us anything - we're here for you.

Whether you're worried about face masks and your field of vision, going back to school or who you can and can't meet up with - we can help.
Contact us with your question here
Shop on AmazonSmile and Amazon donates to Nystagmus Network, at no cost to you.

Since April our supporters have raised over £70.


Thank you for making us (Amazon) Smile!
If you're not yet signed up to raise free donations for the Nystagmus Network every time you shop online, please sign up to Easyfundraising. You'll find all your favourite online retailers at all the usual prices.

Thank you to all our regular Easyfundraisers
Sign up here

Nystagmus Network weather lottery

Would you like the chance to win up to £25,000 every week for £1? Then please sign up to the Nystagmus Network weather lottery.

The proceeds help the charity continue to support the nystagmus community.

Sign up for the weather lottery here

Making your will?

Remembering the Nystagmus Network in your will could make a huge difference to the nystagmus community. It might help fund that elusive piece of research which leads to a cure for nystagmus.

That would be quite a legacy, wouldn't it?

Please remember the charity in your will

Sign up for Gift Aid today! 

Did you know that for every £1 you donate to the Nystagmus Network and for every £1 of your annual membership subscription, the UK government will pay an additional 25p, provided you are a UK tax payer? Already donated? You can still sign up to Gift Aid today. Claims for Gift Aid can be backdated up to 4 years.

You can sign up to Gift Aid by clicking the link below. Thank you.

Please sign up for Gift Aid here

Please consider making a donation 

The Nystagmus Network relies entirely on membership subscriptions, fundraisingdonations and gifts in wills to continue its important work, providing support and information to the nystagmus community, raising awareness and funding research.

Please donate today

Do you follow the Nystagmus Network on social media? Join in the daily conversations on Facebook and keep up with all the latest #Nystagmus news on Twitter and Instagram.


Read all the big stories first on the BLOG.

If you have any comments or would like to see your story included in a future edition of Focus, please contact us today.


Email: info@nystagmusnet.org
Phone: 01427 718093

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