Both Claire and her young son, Zac have nystagmus. In 2019 Claire decided she was going to do a sky dive for the Nystagmus Network. Postponements because of the weather and then again this year because of lockdown, meant Claire was waiting nervously nearly a whole year before she could make her leap. But she … Continue reading Thank you, Claire
The Nystagmus Network runs a virtual support group where people living with Acquired Nystagmus and/or Oscillopsia chat together on email and on zoom to share their experiences and try to find answers together. If you’re living with AN or oscillopsia and would like to join the group, you’d be most welcome. At our recent virtual Open Day we were … Continue reading Living with Acquired Nystagmus and Oscillopsia?
In 2020 Ahrian offered the Nystagmus Network her services as a volunteer. So far she has designed the logo for the @NystagmusYouth Instagram account and the new T-shirt for our 19-21 challenge. Ahrian has nystagmus herself and wanted to give back something to the nystagmus community. She says: “I was born with nystagmus and grew … Continue reading Thank you, Ahrian
We’ve all had to give up so much this year and we’ll all be pleased to make it to the end of 2020. But before we do, the Nystagmus Network is celebrating 12 people who’ve given back so much to the nystagmus community in 2020. We’ll be telling their 12 stories in the run up … Continue reading #GiveBack2020
Gene Vision launched to support those diagnosed with genetic eye diseases London, 01 December 2020 A new website, Gene Vision, has launched today, developed by Professor Mariya Moosajee and Dr Alex Yeong, supported by Dr Peter Thomas (Director of Digital Innovation at Moorfields Eye Hospital). The new site is intended for adults, children and their … Continue reading Gene Vision launches
The Nystagmus Network has joined Visionary as a national member and Sue has been attending the virtual national conference this week. Today marks the official launch of a new Sight Loss Charter which the Nystagmus Network is proud to sign up to. Official press release from Visionary A new Sight Loss Sector Charter has been … Continue reading Sight Loss Sector Charter launches at the Visionary Annual Conference 2020
Thanks to the generosity of National Lottery players, the Nystagmus Network is in receipt of a further grant to support the work of the charity. This welcome additional funding is enabling us to continue delivering support and information services to the nystagmus community, albeit virtually. Charity staff are busier than ever answering enquiries by phone, … Continue reading Thank you to National Lottery players
We are excited to announce the start of a new research study into nystagmus The aim of the study is to gather evidence about people’s perceptions of nystagmus. The results will help shape further nystagmus research and awareness raising strategies, eventually contributing to better understanding of the condition and improved quality of life as a … Continue reading New nystagmus research
Please nominate the Nystagmus Network to win a £1,000 Christmas bonus as part of Ecclesiastical Insurance’s annual 12 days of giving festive campaign. Ecclesiastical will be awarding £1,000 to 12 charities in 12 days this December. Please help us be one of them. Nominations are open now until 21 December. £1,000 would pay for nystagmus … Continue reading Please nominate the Nystagmus Network
We need you! The Nystagmus Network is supporting Professor Chris Harris and his team at the Royal Eye Hospital, Plymouth to investigate further Acquired Nystagmus and Oscillopsia. If you have either or both, we’d love to hear from you. You can help us develop a further research study into these complex, life changing conditions. We … Continue reading Do you have Acquired Nystagmus or Oscillopsia?