People with nystagmus are being invited to contribute to medical research by sharing their experiences of accessing a patient information pack, designed to support people living with the little known and complex eye condition. The team at the University of Sheffield behind the Nystagmus Information Pack would like your help to review the pack and … Continue reading Research participation opportunity
A Guest Post by author and nystagmus Mum, Nadine Neckles So the world has turned on its head and what we once considered normal and safe has morphed into anxiety inducing, mask wearing, groundhog day feeling ‘normality’. COVID-19 has changed a lot of what we do and how we do it, including how and where … Continue reading Homeschooling and nystagmus
Guest post from Roselle Potts, Albinism Fellowship For more information, please contact Roselle Potts, email: email@example.com While the birth of a new baby is an occasion to celebrate, parents of children born with albinism often find that support for children with this rare genetic condition is hard to access. To mark International Albinism Awareness Day* … Continue reading Welcome boost for new mums and dads of young children with albinism
A fabulous new publication, Nystagmus is … a guide for adults, is now available FREE from our online shop. The booklet is inspired by the wonderful Roger (pictured), who first contacted us with the idea last Nystagmus Awareness Day. He began with the words: “I have enjoyed nystagmus for nearly 80 years” and went on to outline … Continue reading Nystagmus is … a guide for adults
The Nystagmus Network is delighted to have been awarded just over £8,000 in National Lottery funding to underpin its work supporting adults with nystagmus. The charity will use the funding to expand our support services to meet the greater needs of the nystagmus community during the pandemic and particularly to reach those who are isolated … Continue reading The Nystagmus Network receives £8,000 from the National Lottery to increase our support services
A guest post from Rosaleen Dempsey, RNIB Hi there I am from the children’s services in RNIB. Wonder if you would mind sharing a survey for families about the impact of the COVID-19 crisis on the education and development of children with VI. Survey has been designed by partners in the sight loss sector and … Continue reading The impact of COVID-19 on visually impaired children
Our next webinar is all about going to a high street optician’s when you have nystagmus. Tuesday 12 May at 3pm You have had an eye test … what now ? An interactive webinar for the nystagmus community. Jayshree Vasani (Dispensing Optician) and Sarah Arnold (Optometrist) want to dispel the myths around what happens after … Continue reading Let’s go for an eye test!
Lots of you are asking us this question and some of you have received notification letters from the government. We asked for expert clinical advice and received the following statement: “IN (infantile nystagmus) or OA (ocular albinism) in isolation are not associated with compromised immunity. “There are some syndromic forms of albinism that are associated … Continue reading Does nystagmus or ocular albinism affect my immunity?
The Nystagmus Network has put together a handy list of tried and tested online learning resources for parents and carers. It’s a list that’s growing day by day. If you’d like to recommend a resource, please contact us and we’ll be happy to add it to our list. A brilliant ‘how to’ guide for parents … Continue reading A round up of online learning
“Expectations Exceeded” Parent and family workshop run by Friends of Moorfields and Blind in Business Friday 22 May 2020 2pm to 5pm Kemp House (next to Moorfields Eye Hospital) 152-160 City Road, EC1V 2NX The Boardroom, 4th Floor Parents, carers, young people, friends and family are all welcome to attend! Learn and speak with blind … Continue reading Blind in Business event