Nystagmus and sleep


Parents often report that their children experience problems sleeping and wonder whether there is any connection with nystagmus. Now a team at University College, London is conducting a research study into vision impairment and sleep patterns. Jess Marshall is a research assistant at UCL Institute of Education. Jess is working on Dr Jessica Hayton’s project … Continue reading Nystagmus and sleep

#YouMadeItHappen – Delilah


This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community. Delilah and her family offered the perfect story for our Jeans for Nystagmus Genes Day campaign, helping us raise awareness of nystagmus as a genetic disorder. Thank you, Delilah You can read Delilah’s … Continue reading #YouMadeItHappen – Delilah

#YouMadeItHappen – Roger


This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community. Roger inspired us to write a brand new guide to nystagmus – for adults. He generously shared his own thoughts on the subject to start us off and members of our community chipped … Continue reading #YouMadeItHappen – Roger

#YouMadeItHappen – Nadine


This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community. Nadine decided she didn’t want her little daughter to grow up in a world where people didn’t know about nystagmus, so she wrote her book ‘Can I tell you about Nystagmus?’ which explains … Continue reading #YouMadeItHappen – Nadine

#YouMadeItHappen – Mike


This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community. Mike is a professional benefits expert who also happens to have nystagmus. He is always ready with advice and guidance which he offers freely to Nystagmus Network members. He also writes our guide … Continue reading #YouMadeItHappen – Mike

#YouMadeItHappen – Patsy


This year on #YouMadeItHappen Day we’re celebrating the nystagmus heroes of 2019 who’ve really helped make a difference for the nystagmus community. Patsy is one of our newest volunteers. It’s thanks to her that we were able to start up our virtual support group for people diagnosed with Acquired Nystagmus. Living with AN herself, Patsy … Continue reading #YouMadeItHappen – Patsy

Can I tell you about Nystagmus?


Nadine Neckles wrote the book ‘Can I tell you about Nystagmus?’ so that her young daughter, who has nystagmus, could live in a world more nystagmus aware. ‘Can I tell you about nystagmus‘ is a useful book for both carers of, and people with nystagmus. The user-friendliness of the book aids understanding of nystagmus, gives useful tips … Continue reading Can I tell you about Nystagmus?

Publication update


Thanks go to Mike Hughes, our volunteer benefits adviser and all round expert on everything to do with benefits and nystagmus. Mike has updated his booklet on DLA, PIP and Nystagmus, so if you missed Mike’s workshops at Open Day, make sure you download your free copy of the latest version of his materials. Download … Continue reading Publication update

Open Day 2019 – the highlights


Over 200 people gathered together on Saturday 28 September at the spectacular Principality Stadium, Cardiff for the Nystagmus Network Open Day 2019. To the strains of Sospan Fach, by Cerys Matthews, Chairman of the Nystagmus Network, Richard Wilson OBE took to the stage to welcome everyone. Up next, Nystagmus Network Founder and Honorary President, Vivien … Continue reading Open Day 2019 – the highlights

Jeans for Nystagmus Genes: Delilah’s story


Delilah’s story: Delilah is helping to raise awareness of children’s genetic disorders with the UK children’s charity Genetic Disorders UK and their annual fundraising day, Jeans for Genes Day. This year, Jeans for Genes Day runs from Mon 16 – Fri 20 September and invites everyone to wear their jeans to work or school in … Continue reading Jeans for Nystagmus Genes: Delilah’s story