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
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
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
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
The Nystagmus Network runs a virtual support group where people living with Acquired Nystagmus and/or Oscillopsia chat together on email and on zoom to share their experiences and try to find answers together. If you’re living with AN or oscillopsia and would like to join the group, you’d be most welcome. At our recent virtual Open Day we were … Continue reading Living with Acquired Nystagmus and Oscillopsia?
Thanks to the generosity of National Lottery players, the Nystagmus Network is in receipt of a further grant to support the work of the charity. This welcome additional funding is enabling us to continue delivering support and information services to the nystagmus community, albeit virtually. Charity staff are busier than ever answering enquiries by phone, … Continue reading Thank you to National Lottery players
Please nominate the Nystagmus Network to win a £1,000 Christmas bonus as part of Ecclesiastical Insurance’s annual 12 days of giving festive campaign. Ecclesiastical will be awarding £1,000 to 12 charities in 12 days this December. Please help us be one of them. Nominations are open now until 21 December. £1,000 would pay for nystagmus … Continue reading Please nominate the Nystagmus Network
We need you! The Nystagmus Network is supporting Professor Chris Harris and his team at the Royal Eye Hospital, Plymouth to investigate further Acquired Nystagmus and Oscillopsia. If you have either or both, we’d love to hear from you. You can help us develop a further research study into these complex, life changing conditions. We … Continue reading Do you have Acquired Nystagmus or Oscillopsia?
In his presentation for the Nystagmus Network virtual Open Day 2020, Kevin McManamon, Senior Associate, Educational Team, Geldards LLP sets out the current position of SEND support in schools in England and Wales. To view Kevin’s and all the other presentations, please register here
As part of the Nystagmus Network virtual Open day 2020 and as a new initiative to get younger people involved with the Network, the charity is creating a new online community for young people living with nystagmus. This community begins on Instagram and is a place for young adults and teens to share their stories, … Continue reading Nystagmus Network launches Nystagmus Youth