The Nystagmus Network is delighted to announce that we have been awarded funding by the Community Fund for a brand new project, called Parent Power. The aim of the project is to empower parents and carers to advocate for their children with nystagmus to ensure they access appropriate educational support in school or early years … Continue reading Parent Power – our new project, funded by the Community Fund
Often it’s a parent, close friend or family member who first discovers that there’s something different about a baby’s eyes. It could be nystagmus. Do you know the milestones in a child’s eye development? Here’s a handy guide from Look After Your Eyes. CLICK HERE.
The Nystagmus Network is contacted more and more often by people living with Acquired Nystagmus. Experience of this condition is very different from Congenital Nystagmus in a number of ways. Often people have had no previous sight problems at all when the nystagmus develops and the changes in their quality of life can be quite … Continue reading Our new support group for Acquired Nystagmus
The Nystagmus Network’s volunteer Education Advocate, Frances Lilley has been supporting families with education for many years on behalf of the charity. She became a trustee in May 2016. She has a teenage daughter with congenital idiopathic nystagmus. Trained by IPSEA, Frances gives parents and carers one to one legally-based advice and support on how … Continue reading Join Frances at Open Day
A guest post from our Open Day 2019 keynote speaker, Daniel Williams, founder of Visualise Training and Consultancy: Losing eyesight is both challenging and difficult, scary and disconcerting. Having to change the way you do things, adapting to new challenges and learn new skills can be exhausting. Perhaps one of the most difficult aspects of … Continue reading “I’m struggling to see at work”
In a recent article published by Vision UK, Founder of Visualise Training and Consultancy, Daniel Williams, discusses the importance of referring patients from the hospital eye clinic or High Street optician’s on to local or national services offering condition specific support and information. It’s time for your regular appointment at your local high street optician. … Continue reading Referrals change lives
The notes below are taken from an article recently published in the British and Irish Othoptic Journal, BIOJ. Arguments for the Adoption of a Nystagmus Care Pathway Authors: Christopher M Harris, Julie Owen, John Sanders In the UK, there are six specialist nystagmus centres with eye tracking facilities, but nystagmus is not a rare condition. … Continue reading A nystagmus care pathway
Man on a Mission with Low Vision, visually impaired entrepreneur Daniel Williams is working to raise awareness of the value to business of meeting the needs of visually impaired customers and employees. Founder of Visualise Training, Daniel is working hard to convince the business world one company at a time. Members of the Nystagmus Network … Continue reading Daniel’s a man on a mission
The Royal National Institute for the Blind (RNIB) has recently released a new guide, Messy and Muddy, which explores outdoor play for children living with sight loss. The new guide offers advice for encouraging a child with vision impairment to get ‘messy and muddy’ and how to support natural development in a safe, accessible and … Continue reading A new RNIB guide to outdoor play
We are grateful to Neil at Social Welfare Training Ltd for keeping us updated with UK benefits rates. For people living with nystagmus or supporting a child or young person with nystagmus, please see our guide to nystagmus and benefits, here.