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Nystagmus Network

@nystagmusnetwork.bsky.social

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.

418 Followers  |  78 Following  |  15 Posts  |  Joined: 13.11.2024  |  1.7024

Latest posts by nystagmusnetwork.bsky.social on Bluesky

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International Nystagmus Symposium 2025 The International Nystagmus Symposium 2025, hosted by the Nystagmus Network, takes place online on Friday 7 November.

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

19.09.2025 09:35 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
Eloise Keeling wearing a white lab coat.

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...

28.08.2025 16:04 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
What’s so great about big nystagmus meet ups? – Nystagmus Network

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...

21.08.2025 07:16 β€” πŸ‘ 1    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
A banner for the big nystagmus meet up in Leeds on Saturday 20 September.

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...

20.08.2025 16:03 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
Vivien holds her MBE with her husband and two sons beside her.

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...

17.07.2025 12:26 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
The Nystagmus Network team wearing their charity T-shirts and jeans.

The Nystagmus Network team wearing their charity T-shirts and jeans.

πŸŽ‰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

24.06.2025 12:14 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

Thank you so much, Visionary!

20.06.2025 20:03 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
A young child wearing glasses and smiling is sitting on a step.

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

20.06.2025 11:30 β€” πŸ‘ 3    πŸ” 1    πŸ’¬ 1    πŸ“Œ 0
Sue smiles for the camera holding a bouquet of flowers.

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

20.06.2025 11:00 β€” πŸ‘ 3    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0

Happy #NystagmusAwarenessDay!

20.06.2025 09:09 β€” πŸ‘ 2    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
A banner for Nystagmus Awareness Day 2025 featuring balloons, bunting and streamers.

A banner for Nystagmus Awareness Day 2025 featuring balloons, bunting and streamers.

Nystagmus Awareness Week is HERE! πŸ‘οΈβ€πŸ—¨οΈ 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

16.06.2025 16:30 β€” πŸ‘ 1    πŸ” 1    πŸ’¬ 0    πŸ“Œ 1

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 Β£6,000.
Founder and Honorary President Vivien Jones gave the charity's thanks, accompanied by chair of trustees, Tim Cuddeford.
buff.ly/Kwh2gKN #CharityGov2025

04.06.2025 17:20 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
An audience clapping with the shortlist badge of the Charity Governance Awards 2025.

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 Β£6,000.
Read our citation on the Charity Governance Awards website here: www.charitygovernanceawards.co.uk/short-list/n...

#CharityGov2025

14.05.2025 10:21 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 1
Nystagmus Network logo.

Nystagmus Network logo.

#Vacancy - Exciting opportunity to join @nystagmusnetwork.bsky.social as Development Coordinator (fundraising, data, volunteers)

β€’ Salary: Β£25k-Β£30k FTE per year
β€’ Hours: 17.5 or 35 hours PW
β€’ Contract: Perm
β€’ Location: Home based England or Wales
β€’ Closing date: 25 Apr

visionary.org.uk/vacancies/

09.04.2025 14:01 β€” πŸ‘ 3    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
Nystagmus Network trustees pose in their charity T-shirts.

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/

28.03.2025 13:41 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
Collage of Dr Gemma Arblaster and Dr Sonia Toor

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 movementπŸ‘οΈ
Find out more πŸ‘‡
nystagmusnetwork.org/nystagmus-ne...

18.03.2025 11:21 β€” πŸ‘ 1    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0

We're looking forward to seeing everyone at the #Nystagmus session. Thank you @visionaryuk.bsky.social

18.02.2025 10:18 β€” πŸ‘ 3    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0
Nystagmus Network logo

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/

07.02.2025 10:31 β€” πŸ‘ 2    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
Nystagmus Network logo.

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/

31.01.2025 12:31 β€” πŸ‘ 2    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0
Vivien is surrounded by her guests at a reception to celebrate the charity's fortieth anniversary.

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.

08.01.2025 16:54 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

Please see our website for information on living with acquired nystagmus and news from one of our research centres - sadly, looking for funding.

18.11.2024 13:53 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0
The Nystagmus Network eye logo and the numbers 1984 - 2024.

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.

13.11.2024 17:06 β€” πŸ‘ 8    πŸ” 0    πŸ’¬ 0    πŸ“Œ 1

@nystagmusnetwork is following 19 prominent accounts