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 family had no idea what nystagmus was, that there was a charity called Nystagmus Network and a wonderful community available for support. We noticed within … Continue reading James’s nystagmus story
Tag: ocular albinism
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 Sight, a team of researchers at the University of Leicester will be investigating glare in patients with infantile nystagmus. People with nystagmus often experience glare, … 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 about the 2022 theme – United in making our voice heard on the United Nations website.
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 albinism (OA, or OCA). Thank you to those who have already responded. We have already found 12 people, but we really need 20 for a … 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 towards athletes classified B4 in international blind sports. The letter is addressed to the IBSA (International Blind Sports Association) and the IPC (International Paralympic Committee). … 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 conditions will never improve, but fortunately will never get worse either, so I’m told. Basically, I’m extremely short sighted and on a good day (with … 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: “IN (infantile nystagmus) or OA (ocular albinism) in isolation are not associated with compromised immunity. “There are some syndromic forms of albinism that are associated … 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 treatment to improve the vision in albinism. This means that the sight of newborn babies with ocular albinism could potentially continue to develop and improve … 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 year at Open Day to speak with researchers, to find out more about our education advocacy service and chat with families affected by ocular or oculocutaneous … Continue reading Roselle is coming to Open Day
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 albinism. Thank you to those who have already responded. We have already found 12 people, but we really need 20 for a viable study. If … Continue reading Does albinism protect against AMD?