@nystagmusnetwork
Our mission is to champion the cause of the nystagmus community we support, to raise awareness of the condition and its impact. We seek to change attitudes, break down barriers, build relationships and drive research.
A postcard for the International Nystagmus Symposium 2026 featuring thumbnail images of our co-chairs, Mervyn Thomas and Frank Proudlock.
Early bird registration and abstract submission are now open for the International Nystagmus Symposium 2026, taking place online on Friday 6 November.
www.eventbrite.co.uk/e/internatio...
International #Nystagmus Symposium 2025
Friday 7 November - online - 13:00 - 17:30 GMT
Registration is open
Abstract submission deadline 30 September
Read more and book here: mailchi.mp/nystagmusnet... #Research #Medicine #Symposium #Ophthalmology #Eyes
Eloise Keeling wearing a white lab coat.
Congratulations to Dr Eloise Keeling who has been awarded a grant by @NystagmusNetwork.bsky.social and Fight for Sight for her research project into potential treatment for Oculocutaneous Albinism (OCA1)
Read more about Ellie's research on our website here: nystagmusnetwork.org/ellie-invest...
Big @nystagmusnetwork.bsky.social Network meet up in Leeds on Saturday 20 September!
It's a chance for people living with nystagmus to meet someone else from their local area, to hear from guest speakers and experts and learn how to live well with nystagmus.
nystagmusnetwork.org/whats-so-gre...
A banner for the big nystagmus meet up in Leeds on Saturday 20 September.
The big nystagmus meet up in Leeds is on Saturday 20 September. Everyone living with #Nystagmus is welcome. Hear from experts, learn how to live well with nystagmus. Full details and the link to book on our website here:
nystagmusnetwork.org/whats-so-gre...
Vivien holds her MBE with her husband and two sons beside her.
Following the announcement that Vivien Jones, Founder and Hon President of @nystagmusnetwork.bsky.social had been awarded an MBE in His Majesty’s New Year Honours, Vivien and her family travelled to London to receive the honour at Buckingham Palace on 26 June. nystagmusnetwork.org/vivien-recei...
The Nystagmus Network team wearing their charity T-shirts and jeans.
🎉We've received a JeansforGenesUK grant to create a parent-friendly resource for families navigating a childhood #Nystagmus diagnosis.
The project builds on the 2023 "Concise Practice Point for managing nystagmus in childhood", to which we contributed. Our thanks to #JeansForGenes #GeneticConditions
Thank you so much, Visionary!
A young child wearing glasses and smiling is sitting on a step.
We’ve been collecting nystagmus stories since 1984. Read them and share them with everyone you know. nystagmusnetwork.org/awareness/yo...
#NystagmusAwarenessDay2025 @nystagmusnetwork.bsky.social
Sue smiles for the camera holding a bouquet of flowers.
Who are @nystagmusnetwork.bsky.social? We’re all connected with nystagmus. You can meet us on our website here: nystagmusnetwork.org/awareness/wh...
#NystagmusAwarenessDay2025
Happy #NystagmusAwarenessDay!
A banner for Nystagmus Awareness Day 2025 featuring balloons, bunting and streamers.
Nystagmus Awareness Week is HERE! 👁️🗨️ Join @nystagmusnetwork.bsky.social as we raise understanding of this visual impairment. Follow along for facts, stories and how you can support our community. #NystagmusAwarenessWeek #NystagmusNetwork #Nystagmus
We won!
At last night's awards ceremony the charity was announced the winner of our category. This means that we will receive a grant of £6,000.
Founder and Honorary President Vivien Jones gave the charity's thanks, accompanied by chair of trustees, Tim Cuddeford.
buff.ly/Kwh2gKN #CharityGov2025
An audience clapping with the shortlist badge of the Charity Governance Awards 2025.
Nystagmus Network shortlisted for UK Charity Governance Awards 2025 for improving impact in small charities. First prize is an unrestricted grant of £6,000.
Read our citation on the Charity Governance Awards website here: www.charitygovernanceawards.co.uk/short-list/n...
#CharityGov2025
Nystagmus Network logo.
#Vacancy - Exciting opportunity to join @nystagmusnetwork.bsky.social as Development Coordinator (fundraising, data, volunteers)
• Salary: £25k-£30k FTE per year
• Hours: 17.5 or 35 hours PW
• Contract: Perm
• Location: Home based England or Wales
• Closing date: 25 Apr
visionary.org.uk/vacancies/
Nystagmus Network trustees pose in their charity T-shirts.
Have you got what it takes to develop our services to meet the ever growing needs of the nystagmus community? The Nystagmus Network is recruiting a full or part time Development Coordinator (fundraising, data, volunteers)
Details of the post on our website here: nystagmusnetwork.org/vacancies/
Collage of Dr Gemma Arblaster and Dr Sonia Toor
@sheffielduni.bsky.social researchers Dr Gemma Arblaster and Dr Sonia Toor have been awarded a @nystagmusnetwork.bsky.social legacy grant to study the focusing ability in people with nystagmus, which causes repetitive, uncontrolled eye movement👁️
Find out more 👇
nystagmusnetwork.org/nystagmus-ne...
We're looking forward to seeing everyone at the #Nystagmus session. Thank you @visionaryuk.bsky.social
Nystagmus Network logo
Visionary Online Session - Join NEW, FREE session for Visionary members:
Understanding #Nystagmus
With Sue Ricketts @nystagmusnetwork.bsky.social
25 Feb, 11AM to 12PM
Find out more about Nystagmus and support available to those affected by Nystagmus.
Register here: www.visionary.org.uk/events/
Nystagmus Network logo.
Visionary Online Session - Join NEW, FREE session for Visionary members:
Understanding #Nystagmus
With Sue Ricketts @nystagmusnetwork.bsky.social
25 Feb, 11AM to 12PM
Find out more about Nystagmus and support available to those affected by Nystagmus.
Register here: www.visionary.org.uk/events/
Vivien is surrounded by her guests at a reception to celebrate the charity's fortieth anniversary.
We are proud to share the wonderful news that our founder, honorary president and Nystagmus Network trustee, Vivien Jones received the MBE "for services to the #Nystagmus community" in His Majesty's New Year's Honours List.
A fitting tribute as the charity marked its Ruby Year.
Please see our website for information on living with acquired nystagmus and news from one of our research centres - sadly, looking for funding.
The Nystagmus Network eye logo and the numbers 1984 - 2024.
Celebrating 40 years since our foundation in 1984 and our first day on Blue Sky.