Category: Members only

Nystagmus Network members hold up their voting cards.

Notice of the Nystagmus Network AGM

Following the announcement of a further national rail strike on Saturday 1 October, charity trustees have been obliged to take both Open Day and the AGM online. Notice is hereby amended that the Annual General Meeting (the “Meeting”) of THE NYSTAGMUS NETWORK (the “Charitable Incorporated Organisation or CIO”) will be held online on Saturday 1 October 2022 at 1:45pm.

Members have been emailed the revised agenda which includes the Zoom link to join the meeting. Members have also already received a copy of the Annual Review 2021, including the signed accounts and the minutes from last year’s meeting. If you are unable to attend the meeting online and would like to vote by proxy, please email us at [email protected] to confirm.

Thank you.

On behalf of Tim Cuddeford
Chair of Trustees, Nystagmus Network

If you would like to join us as a member and enjoy the right to vote as well as other member-only benefits, please visit our membership webpage. Thank you.

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

The logo of the Nystagmus Network and the words Annual General Meeting.

Annual General Meeting

All members of the Nystagmus Network have been notified that the (virtual) Annual General Meeting of the Nystagmus Network takes place at 5pm on Saturday 3 October.

Members will join the meeting via Zoom to:

  • receive the statement of accounts
  • approve the annual report
  • exercise their right to vote

If you would like to enjoy the rights, privileges and benefits of membership of the Nystagmus Network and support the charity to achieve its charitable objectives, please consider becoming a member.

Find out about membership here

a postcard advertising the Night in with the Nystagmus Network

Night in with the Nystagmus Network

Virtual Open Day 2020, on Saturday 3 October, will close with A Night in with the Nystagmus Network, a virtual supper party for members and invited VIP guests. 

This is a fabulous opportunity to meet, chat and network with nystagmus experts, guest speakers and presenters, supporters and members of the Nystagmus Network whilst enjoying a relaxed meal.

Diners will be entertained by our guest speaker, nystagmus hero, Mike Larcombe, who joins us all the way from Australia, following the successful completion of his Walk for Wiggly Eyes. You can watch the highlights of the walk here.

Members registering for this event will receive

  • a set menu to cook at home, purchase as a ready meal or order in
  • a Nystagmus Network cocktail recipe (alcohol free version included)
  • entry to the Nystagmus Network virtual treasure hunt 
  • a zoom link with joining instructions

Not a member, but like to enjoy the Night in with the Nystagmus Network and lots of other member benefits? Please join us today! Annual subscription is £25. Subscriptions help keep the charity going and enable us to continue to invest in nystagmus research.

Become a member of the Nystagmus Network here

a postcard advertising the Night in with the Nystagmus Network

Night in with the Nystagmus Network

The Nystagmus Network virtual Open Day takes place on 3 October, with presentations, workshops, forums and fun for everyone.

The day, full of support and information and everything nystagmus, draws to a close in the evening with the spectacular Night in with the Nystagmus Network, a virtual supper party with an amazing guest speaker.

Night in guests (members of the Nystagmus Network and invited VIPs) will receive a set menu to prepare at home, purchase as a ready meal or order in, the recipe of the Nystagmus Network Cocktail (with an alcohol free version) and your entry form to the Nystagmus Network virtual Treasure Hunt. From 7.30pm onwards you will enjoy the company of your fellow dinners and some special announcements along the way. Plus you will be entertained and inspired by your very special guest speaker, the fabulous Mike Larcombe.

Booking is open NOW.

Free webinars on low vision technology


Together with Sight and Sound Technology, the Nystagmus Network is offering 2 free webinars on low vision technology for adults and children with nystagmus.

Thursday 23 April, 6-7pm: Low vision technology for adults with acquired or congenital nystagmus

Thursday 7 May, 6-7pm: Low vision technology for children with nystagmus, with particular focus on access to learning

The webinars will include case studies, product demonstrations and lots of opportunity for Q+A.

Places are free for members of the Nystagmus Network and limited in number. Members have received details today via our newsletter. If you’re not a member and would like to join us as a member and attend one of the webinars, please contact us by phone or email today.

Thank you.

Nystagmus Network members hold up their voting cards.

Notice of the AGM

Notice of Annual General Meeting

Notice is hereby given that the Annual General Meeting (the “Meeting”) of THE NYSTAGMUS NETWORK (the “Charitable Incorporated Organisation or CIO”) will be held at The Millennium Lounge, The Principality Stadium, Westgate St, Cardiff CF10 1NS on Saturday 28 September 2019 at 15.20.

AGENDA

The Treasurer will take any questions on the statement of accounts

The Chairman will take any questions on the annual report

Members vote on re-appointment of trustees AOB

By order of the Trustees

Richard Wilson OBE

Trustee and Chairman of the Nystagmus Network

September 2019

Nystagmus Network, 15 Robinia Green. Southampton, SO16 8EQ

Members, please note

The annual statement of accounts is available in the charity’s annual report which was sent to members ahead of the meeting and can be found on our website and on the Charities Commission website (a hard copy will be available at the meeting)

The report also covers the Trustee’s annual updates which will be reprised as part of the Open Day programme

If you are unable to attend but would like to cast your votes by proxy, please contact us and we can provide the request form.

Open Day booking for Members is OPEN!

Members of the Nystagmus Network will by now have received their special link to our online booking platform and will be able to book their free adult and child places for Open Day 2019 from midday today, Monday 3 June.

Any remaining tickets will go on sale to non-members from Monday 1 July at midday. Prices will be £32 per adult, £10 per child.

It’s not too late to join. Any new members of the Nystagmus Network can still claim their free places. Why not join us today?