A thank you card from the Nystagmus Network showing an image of 2 boys taking part in a team building exercise.

It’s so nice to be appreciated

In 2021 the Nystagmus Network supported 591 people to come to terms with nystagmus, to find the support and information they needed. We’re even busier in 2022, as more and more people find their way to us and join the virtual nystagmus community. It’s so rewarding when the people we support show us their appreciation.

Here are just some of the lovely things that people are saying about us:

About our Parent Power workshops: “Thank you for setting up today’s workshop. It was really helpful.” … “Thank you – it was wonderfully informative and extremely helpful. Can highly recommend.” … “Thank you so much – it was incredibly insightful and thoroughly worth the time.”

About our monthly forums: “I’ll look forward to the forum next time. It’s nice to keep in touch. It’s part of what makes the Network special.” … “It has been wonderful to hear/speak/learn from all of you and your experiences, to speak to parents with similar challenges. I look forward to attending future parent meetings. Thank you for setting this up!”

About our Information and Support Line: “Huge shout out to the Nystagmus Network for the most informative chat about congenital and acquired nystagmus. Your guidance has been invaluable.” … “Thank you so much for your invaluable advice. Please keep doing what you do.”

About our information documents: “We’re quite early on in learning about our son’s nystagmus and how it affects him and the Nystagmus Network has been so helpful so far. The resources available have explained so much.” … “ I am a big fan of your resources and have found them really helpful.” … “I’ve just read the PDF ‘Nystagmus and benefits’ and found it really interesting, thanks for summarising a lot of info in an ‘easy to understand’ way.” … “. I just wanted to let the charity know that I’ve found the PDF documents really useful so thank you.”

About our Facebook page: “Thank you for all your advice over the last few years, even though it’s taken me nearly 40 years to realise my condition. If only I had known back there I would have been in my teens and the help would have been great. You do a great job getting it out there.” … “I just made my first donation for research! I have AN and Oscillopsia. Fortunately, 12 weeks of neuro rehab with specific eye coordination exercises has helped me be able to walk and jog on the beach near my home. Each mile accomplished is taken with gratitude for the work and support that Nystagmus Network brings. Thank you for all you do!” … “Thank you for the excellent work carried out by the Nystagmus Network. Through it, I’ve learned more about how to live well with my condition in the last few years than I ever thought possible!”

On our Acquired Nystagmus away weekend: “We had a lovely time last weekend and I cannot thank you enough for all the work you put in to make this event so successful.” … “It was so lovely to meet you all in Bath and, whilst tiring for us sufferers, was a great opportunity to chat on a more personal level. We had a great connection and got on so well. I felt like we could see (and appreciate) our individual characters, despite the very troublesome nystagmus. Thank you so much for arranging this.”

a banner promoting easyfundraising, asking our supporters to help us reach our target this year.

Thank you to our easyfundraisers

Thank you Fiona, Jackie, Jane, Lyndsay, Rachel, Sofie, Sue, Tim and all our other lovely supporters for raising donations for the Nystagmus Network with easyfundraising! If you haven’t signed up yet, it’s easy and completely FREE. 6,200 shops and sites will donate to us when you use easyfundraising to do your everyday online shopping – at no extra cost to you! Every donation you raise makes a difference to us so please sign up and share today.

Join easyfundraising here

A banner at a fundraising stall.

Thank you, Emma

For Halloween 2020 Emma and her very determined family held a coffee, cake and crafts fundraiser for the Nystagmus Network. All COVID-19 restrictions were followed and the family raised £400. An amazing effort! Thank you so much!

At Halloween 2020 Emma and her very determined family held a coffee, cake and crafts fundraiser (remember those?) for the Nystagmus Network. All COVID-19 restrictions were followed and the family raised £400. An amazing effort! Thank you so much!

This year has been a difficult year for us all, but Giving makes us feel Good! #GiveBack2020 is your chance to take something positive from 2020 and make a difference at the same time!

Please volunteer, fundraise or make a donation to the Nystagmus Network for #GiveBack2020  

Contact us here to volunteer

Find fundraising ideas here

Please make a donation here


The fingers crossed logo of the National Lottery Community Fund

Thank you to National Lottery players

Please click image to play video.

Thanks to the generosity of National Lottery players, the Nystagmus Network is in receipt of a further grant to support the work of the charity.

This welcome additional funding is enabling us to continue delivering support and information services to the nystagmus community, albeit virtually.

Charity staff are busier than ever answering enquiries by phone, email and on social media and now host monthly zoom get togethers for people living with congenital or acquired nystagmus and parents of children and young people.

There’s no need to feel anxious, alone or uninformed. We’re still here for you thanks to the National Lottery Community Fund.


Find out more about our virtual get togethers here

In the video, Nystagmus Network Chairman, Tim, thanks National Lottery players and the nystagmus Community.