#YouMadeItHappen – Finlay

  • 365 general enquiries answered
  • information and support line available 24/7
  • 5,000 nystagmus leaflets in clinics and hospitals 
  • 75 families calling on our education advocacy service
  • 3 research projects funded, with a further £30,000 for research in 2019

Finlay – you helped make that happen!

Today the whole nystagmus community says thank you to you.

A thank you postcard.

#YouMadeItHappen Monday 19 November

At this time of year we like to celebrate all the amazing things you, our supporters, have made happen. Thanks to you, the Nystagmus Network has spent another successful year providing support and information to everyone affected by nystagmus, raising awareness with our annual Nystagmus Awareness Day on 20 June, our publications, website and our many guest speaker appearances and funding not just 1 but 3 brand new nystagmus research projects.

Without your generosity none of this would be possible. Watch our blog, Facebook and Twitter posts this MONDAY as we highlight your greatest achievements this year and say a huge THANK YOU for your support.

They did it – at last!

The unpredictable British weather finally came good for our intrepid (postponed) abseilers on Sunday 21 September, when Clare A, Glen and Matt finally completed their abseil from the viewing platform of the ArcelorMittal Orbit for nystagmus research.

With not a cloud in the sky nor any hint of wind and rain, our intrepid 3 enjoyed the experience of a lifetime and helped secure the future of ground-breaking nystagmus research at Moorfields and University College, London.


Congratulations all of you. Now you really can say ‘I got the T-shirt!’.

Thank you! You were amazing!

Nystagmus Network trustees and staff would like to say a huge thank you to everyone who helped make Open Day 2018 such an amazing day.

Thank you to all our members and other delegates for supporting Open Day, especially those who travelled long distances and had to get up ridiculously early on a Saturday to be with us. Thank you for your positivity, for your unfailing interest and appreciation.

Thank you to the children for taking part in the workshops, for helping their parents with the table activities and, especially, for designing a Christmas card. Much more about that later!

Thank you to our wonderful keynote speaker, Marsha De Cordova MP, who shared her personal nystagmus story and had parents gasping at her experience of being excluded from story time at nursery. Today she champions the rights of every adult and child with vision impairment.

Thank you to the inspirational David Katz, who, having rubbed shoulders with the rich and famous throughout his stellar photography career, was humbled to finally meet so many people who have nystagmus just like him.

Thank you to our researchers and clinicians who brought us right up to date with their work and, mostly, achieved this in language we could all understand!

Thank you to Jennie from Guide Dogs and Ben from RNIB for their informative presentations and for their valuable time and expertise answering delegates’ questions during the day.

Thank you to Roselle from Albinism Fellowship UK for her pop up presentation and for her offers of support to families affected by albinism.

Thank you to Wil, who inspired us all never to let nystagmus hold us back in anything we do.

Thank you to Mike, the fount of all knowledge when it comes to benefits and nystagmus, for his DLA and PIP workshops and for his patience in dealing with enquiries throughout the lunch break.

Thank you to Adventure Plus and Maayan for providing the children with such engaging workshops to take part in. We have some wonderful photographs to share!

Thank you to Wendy and Hazel from Guide Dogs and Tim from Royal National College for chatting with delegates and sharing so much invaluable information.

Thank you to James for the lovely guitar recital at lunch time.

Thank you to our exhibitors: Graham from Aspire, Dave from Dolphin, Rebecca from Humanware and Malcolm from Orcam for introducing us all to the latest technologies to support vision impairment.

Thank you to Jay, Neil and the Istead team for their professionalism in supplying the sound and music and, as always, for their total unflappability.

Thank you to Matt for the stunning photography which we will begin sharing on our website and elsewhere shortly.

THANK YOU EVERYONE! Open Day would not happen without you.



Thank you, King Cross Surgery!

The Nystagmus Network is hugely grateful to King Cross Surgery in Halifax for their amazing support on Nystagmus Awareness Day 2018.

Practice Manager, Heather, whose 8 year old son has nystagmus, says:

“The Network was and is an invaluable resource to us as new parents, to understand his condition and how it may affect him as he grows.

At the start of 2018, the Practice’s Patient Participation Group (PPG) agreed a number of charities it would support throughout the year. They agreed that Nystagmus Awareness Day on 20 June would be the first.

Members of the PPG drummed up support from local businesses to donate raffle prizes and we held a bake sale for the Wednesday itself. We had 15 raffle prizes ranging from a £30 Tesco voucher, pamper hamper and produce hamper to jewellery, wine and chocolates. Staff and patients alike bought tickets for the raffle (£1 each) and this was drawn last Friday.

The Bake Sale was very successful. We used the resources sent from the Network to promote awareness of the condition and I spoke to patients about it when they visited the stall. We raised £247!

We put up a small display opposite the reception desk to promote the raffle and the Network. A patient who has nystagmus was so impressed with this he took a picture and said it was the first time he’d seen anything about nystagmus in a health care setting! The need for raised awareness is clearly there.

Other practice managers around Calderdale contributed to the raffle and a couple of them will be holding similar events in their practices to raise more awareness and funds to support the great work the Network does.”

THANK YOU, Heather and everyone involved!