In 2023 the Nystagmus Network received a legacy gift from the late Mrs Rhoda Clarke in the sum of £32,114. 71 The gift was made in the name of Mrs … Continue reading Aunt Rhoda’s gift to nystagmus research
Tag: ocular albinism
James’s nystagmus story
This Nystagmus Awareness Day we’re asking you to share your story. This is James’s story. You can share your story here Until my son Sullivan was born, we as a … Continue reading James’s nystagmus story
The impact of glare on reading
Researchers are investigating the impact of glare on young children with albinism and nystagmus to help ease important day-to-day tasks like reading. Jointly funded by Nystagmus Network and Fight for … Continue reading The impact of glare on reading
International Albinism Awareness Day, 13 June
We are delighted to mark international Albinism Awareness Day with our friends living with albinism both here and across the world and especially with Albinism Fellowship UK. Find out more … Continue reading International Albinism Awareness Day, 13 June
Does albinism protect against AMD?
We are seeking potential research candidates on behalf of researchers in Southampton (Jay Self and Helena Lee) who must be over the age of 60 and have any form of … Continue reading Does albinism protect against AMD?
Discrimination against B4 athletes within International Blind Sport
Charities supporting people living with vision impairments, including the Nystagmus Network and the Albinism Fellowship UK, have signed an open letter from B4 International Blind Sports, outlining concerns about discrimination … Continue reading Discrimination against B4 athletes within International Blind Sport
Nystagmus in lockdown
In this Guest Post, Neil writes about his experiences of lockdown as a visually impaired person. I’m registered partially sighted and diagnosed with nystagmus and ocular albinism from birth. Both … Continue reading Nystagmus in lockdown
Does nystagmus or ocular albinism affect my immunity?
Lots of you are asking us this question and some of you have received notification letters from the government. We asked for expert clinical advice and received the following statement: … Continue reading Does nystagmus or ocular albinism affect my immunity?
Research into albinism could be good news for babies born with nystagmus
Dr Helena Lee from the University of Southampton was happy to announce this week the publication of a first paper from the OLIVIA study which shows the potential for L-DOPA … Continue reading Research into albinism could be good news for babies born with nystagmus
Roselle is coming to Open Day
Because there is such a close link between albinism and nystagmus, the Nystagmus Network works closely with Albinism Fellowship UK. Chair of AFUK, Roselle Potts, will be joining us this … Continue reading Roselle is coming to Open Day