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.
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
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
International Nystagmus Symposium 2025
The International Nystagmus Symposium 2025, hosted by the Nystagmus Network, takes place online on Friday 7 November.
mailchi.mp
September 19, 2025 at 9:35 AM
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
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
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...
Read more about Ellie's research on our website here: nystagmusnetwork.org/ellie-invest...
August 28, 2025 at 4:04 PM
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...
Read more about Ellie's research on our website here: nystagmusnetwork.org/ellie-invest...
Reposted by 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...
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...
What’s so great about big nystagmus meet ups? – Nystagmus Network
nystagmusnetwork.org
August 21, 2025 at 7:16 AM
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...
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...
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...
nystagmusnetwork.org/whats-so-gre...
August 20, 2025 at 4:03 PM
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...
nystagmusnetwork.org/whats-so-gre...
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...
July 17, 2025 at 12:26 PM
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...
🎉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
The project builds on the 2023 "Concise Practice Point for managing nystagmus in childhood", to which we contributed. Our thanks to #JeansForGenes #GeneticConditions
June 24, 2025 at 12:14 PM
🎉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
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!
It's been a pleasure @nystagmusnetwork.bsky.social having you take over our Bluesky account today for #NystagmusAwarenessDay2025 to share important information and valuable support details about #Nystagmus. Many thanks!
June 20, 2025 at 8:03 PM
Thank you so much, Visionary!
Reposted by Nystagmus Network
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
#NystagmusAwarenessDay2025 @nystagmusnetwork.bsky.social
June 20, 2025 at 11:30 AM
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
#NystagmusAwarenessDay2025 @nystagmusnetwork.bsky.social
Reposted by Nystagmus Network
Who are @nystagmusnetwork.bsky.social? We’re all connected with nystagmus. You can meet us on our website here: nystagmusnetwork.org/awareness/wh...
#NystagmusAwarenessDay2025
#NystagmusAwarenessDay2025
June 20, 2025 at 11:00 AM
Who are @nystagmusnetwork.bsky.social? We’re all connected with nystagmus. You can meet us on our website here: nystagmusnetwork.org/awareness/wh...
#NystagmusAwarenessDay2025
#NystagmusAwarenessDay2025
Happy #NystagmusAwarenessDay!
Hurray! It’s #NystagmusAwarenessDay2025! Please join us, @nystagmusnetwork.bsky.social today and everyday to raise awareness of this complex, incurable eye condition. Thank you!
nystagmusnetwork.org/awareness/
nystagmusnetwork.org/awareness/
June 20, 2025 at 9:09 AM
Happy #NystagmusAwarenessDay!
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
June 16, 2025 at 4:30 PM
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
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
June 4, 2025 at 5:21 PM
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
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
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
Read our citation on the Charity Governance Awards website here: www.charitygovernanceawards.co.uk/short-list/n...
#CharityGov2025
May 14, 2025 at 10:21 AM
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
Read our citation on the Charity Governance Awards website here: www.charitygovernanceawards.co.uk/short-list/n...
#CharityGov2025
Reposted by Nystagmus Network
#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/
• 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/
April 9, 2025 at 2:01 PM
#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/
• 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/
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/
Details of the post on our website here: nystagmusnetwork.org/vacancies/
March 28, 2025 at 1:41 PM
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/
Details of the post on our website here: nystagmusnetwork.org/vacancies/
Reposted by Nystagmus Network
@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...
Find out more 👇
nystagmusnetwork.org/nystagmus-ne...
March 18, 2025 at 11:21 AM
@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...
Find out more 👇
nystagmusnetwork.org/nystagmus-ne...
We're looking forward to seeing everyone at the #Nystagmus session. Thank you @visionaryuk.bsky.social
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/
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/
February 18, 2025 at 10:18 AM
We're looking forward to seeing everyone at the #Nystagmus session. Thank you @visionaryuk.bsky.social
Reposted by Nystagmus Network
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/
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/
February 7, 2025 at 10:31 AM
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/
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/
Reposted by Nystagmus Network
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/
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/
January 31, 2025 at 12:31 PM
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/
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/
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.
A fitting tribute as the charity marked its Ruby Year.
January 8, 2025 at 4:54 PM
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.
A fitting tribute as the charity marked its Ruby Year.
Celebrating 40 years since our foundation in 1984 and our first day on Blue Sky.
November 13, 2024 at 5:06 PM
Celebrating 40 years since our foundation in 1984 and our first day on Blue Sky.