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

SIGHT LOSS: MY UNSPOKEN REALITY


GUEST POST by Elin I’ve always had an honest approach when it comes to writing about sight loss. If you scour through my blog’s archives, you’ll find posts on anxiety, loneliness, bullying and the misconceptions, just to name a few. I think that the fact I’ve offered a window view into these strands of my … Continue reading SIGHT LOSS: MY UNSPOKEN REALITY

Could you walk eye to eye for nystagmus research?


In 2019 20 Nystagmus Network supporters, their friends and family members raised £11,500 for nystagmus research by taking part in the Eye to Eye walk. We’re doing it all once more in 2020, but we need your help to raise even more money for nystagmus research at Moorfields Eye Hospital and University College, London. You … Continue reading Could you walk eye to eye for nystagmus research?

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