With people joining us from both sides of the Atlantic, there was some very interesting discussion at the most recent Nystagmus Network forum for adults with Acquired Nystagmus and Oscillopsia. Symptoms It is always reassuring, particularly for new members of the group, to hear the wide range of symptoms others are experiencing. These range far … Continue reading Notes from the January AN/Oscillopsia Forum
Tag: nystagmus
Notes from the January Parent Forum
The Nystagmus Network runs regular virtual get togethers for parents and carers on Zoom. Here’s Sue’s report on the January event, which focused on homeschooling. It was lovely to see Mums and Dads on the Nystagmus Network Parents’ Forum this month. You’re all doing a great job on the homeschooling front, but I think it’s … Continue reading Notes from the January Parent Forum
Nystagmus Networking
With a most difficult year now thankfully behind us, the Nystagmus Network is here to support the nystagmus community in any way we can. Keeping you connected Virtual meet ups for people living with nystagmus, or supporting someone who does, resume this month. For parents There will be a virtual parents’ forum at 8pm on Tuesday 12 January. … Continue reading Nystagmus Networking
A Christmas message from Tim
Nystagmus Network Chairman, Tim Cuddeford has sent a Christmas message to members of the Nystagmus Network. Tim spoke of the challenges that 2020 has brought for everyone, not least the nystagmus community, but also highlighted the successes the charity has been able to achieve, thanks to the support of our intrepid fundraisers and donors and … Continue reading A Christmas message from Tim
Thank you for donating to our BBC Radio 4 appeal
Thank you to everyone who gave to our BBC Radio 4 charity appeal in June this year. The appeal raised £9, 230. You can read what a difference the appeal has made to the charity and the nystagmus community on the BBC website here where you can also listen again to Richard Osman presenting the … Continue reading Thank you for donating to our BBC Radio 4 appeal
Thank you, Zoe
It’s fitting that our final nystagmus hero of 2020 is someone who has been working tirelessly all year looking after some of our most vulnerable people. Zoe is a care supervisor and head house keeper in a care home, working over 40 hours a week. She was born with nystagmus and optic atrophy. She struggles … Continue reading Thank you, Zoe
Thank you, Nikita
On World Sight Day 2020, Nikita was named an Eye Health Hero by the IAPB (the International Agency for the Prevention of Blindness). Nominated for her innovative work in perimetry, we’re sure that Nikita has a brilliant nystagmus research career ahead of her. And now we’re not the only ones to think so. You can … Continue reading Thank you, Nikita
Thank you, Nadine
Thanks to her book ‘Can I tell you about nystagmus?’, children and their parents feel better able to explain nystagmus to others. In 2020, with the country in lockdown and schools closed, Nadine came up trumps again with advice and tips for parents struggling with homeschooling. Most importantly of all, Nadine allowed us to let … Continue reading Thank you, Nadine
Sold out!
Thank you to everyone who has ordered a woolly nystagmus mascot this year. We are now officially sold out. Together you have raised £360 and given new homes to 72 mascots. THANK YOU! Huge thanks, too, to our volunteers, Lynda and Sue, for all the knitting.
Thank you, Mervyn
Nystagmus can be challenging to diagnose in children and often the level of sight loss a newly diagnosed child will experience is unclear, leading to significant anxiety for parents who fear their child will develop severe visual impairment. Thanks to the work of Dr Melvyn Thomas and the research team at the University of Leicester … Continue reading Thank you, Mervyn