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.
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...
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
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
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/
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.