Nystagmus Network members hold up their voting cards.

Thinking of becoming a member?

There’s nothing quite like the feeling of belonging, of knowing that you’re part of a wider virtual nystagmus community and among friends, all working for the same goals as you.

That’s why the Nystagmus Network is a membership organisation.

The more people we represent who are living with nystagmus, or have an interest in the condition, the better able the charity will be to influence real change and to make your voice heard.

Find out more about membership here

Tim stands by a Christmas tree. He is holding a glass of wine and wearing a strand of tinsel around his shoulders.

A Christmas message from Tim

Nystagmus Network Chairman, Tim Cuddeford has sent a Christmas message to members of the Nystagmus Network.

Tim spoke of the challenges that 2020 has brought for everyone, not least the nystagmus community, but also highlighted the successes the charity has been able to achieve, thanks to the support of our intrepid fundraisers and donors and the generosity of National Lottery players and those who donated to the charity’s BBC Radio 4 appeal. The team has continued to provide support and information services, albeit virtually, and even fulfil research investment commitments, whilst adapting services to meet growing and changing needs.

The charity looks forward to a happier, healthier and safer New Year for all.

If you would like to join the Nystagmus Network as a member, you can find out more here

Membership of the Nystagmus Network

Membership subscriptions increase from 1 April

No one here at the Nystagmus Network can actually remember the last time there was an increase in our annual membership subscriptions. That means it must have been at least a decade ago.

But with the charity’s work and reach expanding all the time as we seek to meet the needs of an ever growing nystagmus community and foster and fund research wherever we can, the time has come.

From 1 April 2019 membership of the Nystagmus Network will increase from £20 to £25 a year. We believe that’s an affordable price to pay to know that you are making your voice heard alongside others of like mind and helping support a national charity.

Subscribe or renew your membership 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.

Nystagmus Network members hold up their voting cards.

Are you a member?

There’s nothing quite like the feeling of belonging, to know that you’re part of a community and among friends, all working for the same goals as you.

That’s why the Nystagmus Network is a membership organisation.

The more people we represent who are affected by nystagmus, or have an interest in the condition, the better able the charity will be to influence real change and to make your voice heard.

Membership benefits include:

  • Priority booking for all events, including a FREE place at Open Day
  • Access to our advocacy service and ongoing advice and guidance
  • Automatic subscription to our fortnightly e-newsletter, Focus
  • Support and information from a named staff member or volunteer
  • Contact from us by email or post about charity developments
  • Personalised advice on nystagmus and benefits
  • Regular updates on research and trial participation opportunities
  • News of fundraising events, including FREE run places
  • Invitations to participate in local and regional groups
  • Notification of our annual Nystagmus Awareness Day campaigns
  • Networking opportunities with others affected by nystagmus
  • A proportion of your subscription will go directly into funding research

We offer affordable membership to anyone affected by nystagmus. Together we can all make a difference.

You can join us as a member in a number of ways

Buy an annual subscription through a one off payment of £20 from our online shop, here.

Sign up for an annual Direct Debit payment of £20. Contact us to request a DD form here.

Set up a regular monthly payment online, where you decide the amount you pay, through our CAF (Charities Aid Foundation) Account, here.

JOIN US TODAY! 

Nystagmus Network members hold up their voting cards.

Have you got our new number?

The registered charity number for the Nystagmus Network has changed. Our new number is 1180450. This marks our successful transition from humble charity to a Charitable Incorporated Organisation, as voted for by our members at our AGM in September. Only our number has changed. We remain a membership organisation serving the needs of the nystagmus community, providing support and information, raising awareness and funding research.

Contact details:

Email: [email protected]

Web: www.nystagmusnetwork.org

Facebook: NystagmusNetwork

Twitter: @NystagmusUK

Education information for all

Have you visited our online Education Resource HUB?

You’ll find everything you need to know about supporting a child through education, as a parent, carer or teacher, from the early years right through to college and beyond.

We also offer an education advocacy service to members.

Visit the HUB here.

Open Day 2018 – booking open soon

We are just finalising details of our annual Open Day 2018. We shall once again be in central Birmingham. The date is Saturday, 29 September. The venue is the same as last year, the MacDonald Burlington Hotel, across the road from Grand Central.

We already have some very exciting speakers lined up. We will also be joined by teams of research scientists from the leading nystagmus centres across the UK. Each team will have the opportunity to present their latest research findings and recruit willing participants to new studies and trials. Delegates will also have the opportunity throughout the day to speak one-to-one with research and medical experts.

Education and benefits experts will be on hand to answer your individual questions.

There will be bespoke sessions for adults with CN or AN, parents of children with nystagmus and, not forgetting, the children and young people themselves.

Throughout the day there will also be inspirational presentations, interactive workshops and fun activities for everyone to attend together, to make sure that everyone gets the most from their day.

We look forward to having you with us.

Priority booking for members of the charity will open shortly. Members will be notified personally.