Ella is a third year student at Nottingham Trent University. She just happens to have nystagmus. She is full of advice and inspiration for other young people with nystagmus. Hear her interview with RNIB Connect Radio.
The Nystagmus Network is pleased to share this guest post from our friends at Visualise Training and Consultancy. The new guide ‘Seeing Beyond The Eyes’ includes details of the charity’s services and our contact details so that patients with nystagmus can find us easily for information and support. Eye care and Health Professionals armed with … Continue reading Seeing Beyond The Eyes
Here at the Nystagmus Network we often hear from people who are twins or parents of twins. Sometimes both twins have nystagmus, but sometimes only one of them does. This got us wondering. When twins are identical, do both twins have nystagmus? If not, why not? Nathan and Joshua are identical twins, seen here playing … Continue reading Twins appeal!
Children aged between 8 and 11 years old who live with a visual impairment are three times more likely to develop a mental health problem than children with no visual impairment, according to new research. The Nystagmus Network has been aware of this for a long time and always highlights the social and emotional aspects … Continue reading Visual impairment and mental health
James and his little brother, Thomas, are taking on a very special challenge this summer to raise money for two charities very close to the family’s heart. James (8) and Thomas (5) have decided to challenge themselves to walk 118 miles throughout August to raise money for Chromosome 18 Registry and Research Society Europe and … Continue reading James and Thomas’s Summer Challenge
As photophobia is a frequent accompaniment to nystagmus and ocular albinism, we’re happy to join in a day of celebrating sunglasses and raising awareness of the importance of protecting your eyes, whether you have nystagmus or not, from damaging UV rays. We’re enjoying some beautiful, warm sunny weather across the whole of the UK right … Continue reading Celebrating National Sunglasses Day!
We couldn’t resist one more ‘amazing’ nystagmus success story. Not everyone with nystagmus can drive, but Bradley has turned driving into his philosophy on life. My name is Bradley. I’ve had nystagmus since birth. My parents found out about it when I was 4. As a child, I was in and out of hospitals. It … Continue reading How amazing is Bradley
On the Tuesday of ‘wobbly week’ 2018, a group of trustees were invited to Parliament to meet with Marsha De Cordova MP, Shadow Minister for Disabilities. Marsha has nystagmus herself and understands the challenges of accessing the necessary adaptations to make her parliamentary career possible. Meeting at Portcullis House, trustees, all wearing their Nystagmus Network … Continue reading Charity trustees meet Marsha
On Nystagmus Awareness Day 2018, the Nystagmus Network’s Information and Development Manager, Sue, shared her nystagmus story and explained why it’s so important to continue to raise awareness of nystagmus. Read Sue’s online article here.
A guest post from Sara’s Mum … This is my daughter Sara. She’s 17 now and born with albinism and nystagmus. Her sight is badly affected, but nothing stops her!!! She is in mainstream school, a huge circle of amazing friends and lives for sports. She has an all Ireland silver medal for camogie (an … Continue reading How amazing is Sara?