“Taylan is amazing”, says his Mum. “He struggles with his balance and sight but every day he tries his hardest at school and at home. He is kind and friendly and always smiling. He is perfect just the way he is and is our star today and every day.”
Thank you
Serena is a remarkable young person. She had a few medical problems early on in life and has very reduced vision, but her positive outlook means she gets on with life, surpassing even her parents’ aspirations and is always thinking of others. They say: “She brightens our day when things get too much. Just her smile makes you forget your worries. She’s here and she’s happy and she knows she’s loved.”
Thank you
Rory is nominated by his Mum. She says: “Rory’s nystagmus was diagnosed only 6 months ago, so we both still have a lot to learn! We may have further obstacles in the future, but he is not letting anything hold him back!”
Thank you
Sometimes Lexi gets upset and wishes she could see better, but she carries on. Her mum says: “Lexi is my star. I’m so proud of her. She makes me want to do better every day!”
Thank you
Joshua embraces every opportunity and does not let nystagmus stand in his way. If he had the choice to wake up without nystagmus he wouldn’t choose to do so. He says: “I would never take my nystagmus away, because it is who I am”.
Thank you
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 examining sleep in children with vision impairment (aged between 5-11 years). The project is funded by the British Academy/Leverhulme small research grant and is ethically approved by the Ethics Committee at UCL.
The aim of the study is to establish whether sleeping problems are evident in children with vision impairment. To do this, they will be comparing sleeping patterns of sighted children to those of children with a vision impairment. They are now recruiting any sighted child aged 5-11 years and any child with a vision impairment (ranging from partial sightedness to blindness).
The study explores sleep and sleep-related issues using actigraphy (a motion sensitive non-invasive wristwatch), sleep diaries and parental report questionnaire. The sleep diary is to be kept for a minimum of 5 nights if possible and the actigraphy is optional, but it does help!
Participants will not need to travel to London as the actigraphy watch can be posted to a home address.
If any parents/carers might be interested in their child(ren) participating, please email Jess ([email protected] ) or Dr Hayton ([email protected]). Parents and participants will then be provided with more information.
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 Jeans for Nystagmus Genes story, here.
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 in with their own thoughts.
The result? A brand new guide to nystagmus, which will be published in the New Year.
Thank you, Roger
Read Roger’s description of nystagmus here.
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 nystagmus so simply that even a child can understand it.
Thank you, Nadine
You can order your copy of Nadine’s book, here.
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 to nystagmus and benefits.
A regular at our annual Open Day, Mike lends his time, support and expertise to Nystagmus Network members every day of the year.
Thank you, Mike
Download the latest version of Mike’s guide: DLA, PIP and Nystagmus, here.
