#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

Parent Power comes to Cambridge


Parent Power, funded by the National Lottery Community Fund The Nystagmus Network invites parents and carers to attend our next Parent Power education workshop. Venue:      TBC, Cambridge Date:          Saturday 25 January Time:         10am to 2pm The aim of the project is to empower parents and carers with legally based information on how to advocate for … Continue reading Parent Power comes to Cambridge

Parent Power comes to London


Parent Power, funded by the National Lottery Community Fund The Nystagmus Network invites parents and carers to attend our next Parent Power education workshop. Venue:      Can Mezzanine, Borough, London Date:          Saturday 23 November Time:         9.30am to 1pm The aim of the project is to empower parents and carers with legally based information on how to … Continue reading Parent Power comes to London

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