Category: Members only

Dan Williams crouches beside his guide dog, Zodiac.

Introducing Daniel

Daniel Williams is our keynote speaker at Open Day 2019.

Daniel is the founder of Visualise Training and Consultancy, a company which delivers sight loss awareness to employers.

Daniel, who is gradually losing his own sight due to Retinitis Pigmentosa, says:
“I am passionate about disability rights and making mainstream services accessible to all, enabling people with disabilities to be as independent as possible. I want to facilitate the social change that will eradicate the shameful employment gap between people with disabilities and the wider population, and I believe Visualise represents one important step in that change.”

Meet Daniel at Open Day.

Priority booking for members only free places opens soon. Any remaining tickets will go on general sale in the run up to our event.

Front cover of the book 'Can I tell you about nystagmus?'.

Meet Nadine at Open Day

Author of the 2019 book ‘Can I tell you about Nystagmus?’ will be at the Nystagmus Network Open Day on Saturday 28 September.

Amber, the leading character in Nadine’s book, was inspired by her daughter, who has nystagmus.

At Open Day Nadine will be happy to chat with parents and share experiences of parenting a child with impaired vision.

She will also be signing copies of her book. If you’ve already purchased a copy, bring it along. Or you can buy a copy on the day.

Listen to a special message from Nadine for Nystagmus Awareness Day 2019, here.

Priority booking for free members only places at Open Day opens soon. Any remaining tickets will go on general sale in the run up to the event.

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! 

Welcome to our honorary members

On Giving Tuesday, to say thank you and as a mark of our appreciation of their support, we’ve invited our top 20 fundraisers of 2018, who were not already members, to join the Nystagmus Network as members in 2019.

Are you one of the chosen ones?

We are delighted that they have agreed to accept. Here’s what our new alumni have been saying:

“I am honoured to be an honorary member.”

“This has absolutely made my day and I’m so very honoured to be thought of.”

“That is wonderfully kind. I would love to get closer to your great work.”

“I think it’s so important to get together, share ideas and discuss experiences, especially for parents of children with nystagmus.”

You can join as a member, too. Please click here.