Want to meet up?


You’re warmly invited to join us for one or more of our upcoming forums in the run up to Open Day 2020. Because we know that one of the ‘best bits’ of Open Day is meeting up with others, we’re holding a series of online forums to help you do just that. In August and September, we’ll … Continue reading Want to meet up?

Discrimination against B4 athletes within International Blind Sport


Charities supporting people living with vision impairments, including the Nystagmus Network and the Albinism Fellowship UK, have signed an open letter from B4 International Blind Sports, outlining concerns about discrimination towards athletes classified B4 in international blind sports.  The letter is addressed to the IBSA (International Blind Sports Association) and the IPC (International Paralympic Committee). … Continue reading Discrimination against B4 athletes within International Blind Sport

Renewing a driving licence


Here is the latest update from the DVLA regarding driving licence services. As a result of the impact of the COVID-19 pandemic, Ministers at the Department for Transport have agreed to adopt a temporary measure to assist drivers in complying with the driving licence renewal requirements. To make it easier for drivers who need to renew … Continue reading Renewing a driving licence

BBC charity appeal raises £8,000


Following transmission of the Nystagmus Network’s Radio 4 appeal, presented by Richard Osman, the charity has received universally positive feedback on the clarity of the broadcast’s message. One listener, in his 70s, said he had learned more about nystagmus in those 3 minutes than throughout the rest of his life. We have been contacted by … Continue reading BBC charity appeal raises £8,000

Research participation opportunity


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

Homeschooling and nystagmus


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

Welcome boost for new mums and dads of young children with albinism


Guest post from Roselle Potts, Albinism Fellowship For more information, please contact Roselle Potts, email: chair@albinism.org.uk 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

Nystagmus is … a guide for adults


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 receives £8,000 from the National Lottery to increase our support services


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

The impact of COVID-19 on visually impaired children


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