If you or someone in your family has nystagmus, then make sure you meet your ECLO (Eye Clinic Liaison Officer). You can ask for them the next time you visit the clinic, or find their details on your local authority’s ‘local offer’ page, under visual impairment or sensory services. Alternatively you can search the RNIB’s … Continue reading Do you know your ECLO?
A research paper is republished this month into the quality of life of people living with nystagmus. Professor Irene Gottlob and Dr Rebecca McLean from the University of Leicester shared their findings in the British Journal of Ophthalmology. Their report followed an extensive research study, funded jointly by the Nystagmus Network and Fight for Sight. … Continue reading Nystagmus and Quality of Life
If you can join Julian for just one of the 1,000 miles he plans to walk for sight research, or stand at the side of the road as he passes through your town or village, you’ll be in very good company. There will be lots of other people there who suffer from visual impairment and … Continue reading Join the crowds to cheer on Julian as he begins his Big Blind Walk
A report by John Sanders who, at different times, has been a Nystagmus Network trustee, as well as an employee and continues to be a member of the charity. The other day I went to a talk entitled “My wobbles through the world of nystagmus” by Southampton based ophthalmologist, Helena Lee. This was part … Continue reading More rejections than Harry Potter?
Nystagmus Network trustee and golfing enthusiast, Peter Greenwood, traveled to Studley Wood Golf Club in Oxfordshire earlier this week to receive, on behalf of the charity, a cheque for £4,300. The money had been raised during the year at various events by club members, their friends and families after club captain for the year, Mike … Continue reading Thank you to Mike and Studley Wood GC
Thanks to Outspan Rebels team founder, Jamie Fuller, who has managed to secure sponsorship from the Snow Sports Foundation, there will be two Nystagmus Network Snow Camps this summer. These will take place at the Snow Dome, Milton Keynes, on Sunday 17 June and Sunday 15 July. If you would like to come along for … Continue reading Nystagmus Network Snow Camps 2018
Jamie and Josh Fuller are well known in the nystagmus community as the father and son team who delivered an inspirational presentation at Open Day last September. Jamie organised the Nystagmus Network’s first ever ski experience last year and this year they have promised us not one but two ski camps. The Outspan Rebels VI … Continue reading The Outspan Rebels VI ski team
Internationally acclaimed photographer and Nystagmus Network member, David Katz, has just returned from the assignment of a lifetime, covering the Winter Paralympics in Pyeongchang. He has put together an incredible film to showcase his experience. Meet David at our annual Open Day in Birmingham on Saturday 29 September.
Did you know that for every pound you donate to the Nystagmus Network and for every pound of your annual membership subscription we can claim an additional 25p back from the UK government, provided you are a UK tax payer? This means a huge amount to a small charity like us and costs you absolutely … Continue reading Have you signed up for Gift Aid?
Nystagmus Network’s Executive Information and Development Manager, Sue, will be speaking at the Aniridia UK London meeting on Saturday, 14 April. ANUK warmly invite everyone affected by aniridia to join them for the day. There will be lots of opportunity to meet and share experiences with other people who have aniridia. There will also be … Continue reading Sue will be at ANUK conference