Nystagmus Network Open Day – Saturday 25 September
We promise a packed programme of presentations, inspirational speakers, research updates, videos, workshops, forums, competitions and so much more – all available wherever you are. Plus, you’re warmly invited to join a fabulous live and interactive networking event. The theme for this year is ‘How amazing are you?‘. We’ll be celebrating all of your successes! Following the success of ‘virtual’ Open Day 2020, we’ll be doing it all again, but this time even bigger and better and, of course, it’s all free of charge.
Violinist, soprano, opera impresario and Nystagmus Network member, Joanne Roughton-Arnold chats with Nystagmus Network’s Sue on Saturday 3 October as part of the Nystagmus Network virtual Open Day 2020.
Hear Joanne talk about her experiences of her childhood and offer inspiration to young people with nystagmus dreaming of a career in the performing arts.
The Nystagmus Network is delighted to share news of the launch today of a brand new book about nystagmus.
Written by Nadine Neckles, the book looks at nystagmus from a child’s point of view and provides insights for parents and professionals alike.
Nadine is a friend of the Nystagmus Network and previously contributed an article about her daughter’s nystagmus for our fortnightly newsletter, Focus, in June 2017. Read her article in full by clicking here.
Since then she has continued to parent her daughter, who also has Chromosome 18q-, whilst writing her blog, Caring in the Chaos.
Meet Nadine at Open Day
Nadine will be joining us at Open Day 2019 on Saturday 28 September. Delegates will have an opportunity to meet her and chat with her about bringing up a child with nystagmus and purchase a copy of the book, signed by the author.
Nystagmus Network endorsement
The Nystagmus Network’s Sue Ricketts has provided an endorsement for the book:
“Can I tell you about Nystagmus … highlights a much misunderstood condition. Seen from the family’s perspective, the description of the way nystagmus affects the daily life of a young child will be informative and reassuring for other parents.”
Order your copy today
The book is available to order directly from the publishers. Please click here for details.
Marsha De Cordova MP, Shadow Minister for Disabilities and MP for Battersea, features in the Shaw Trust’s Disability Power 100 2018. This is well deserved recognition for a person who has worked and campaigned tirelessly for disability rights, especially for those with impaired vision, and continues to do so.
The Nystagmus Network was delighted to welcome Marsha, who has Congenital Nystagmus, as our keynote speaker at Open Day 2018.
You can read details of Disability Power 100 here.
Tickets to the biggest UK nystagmus event of the year will soon be available to book. Subscribed members of the charity will be able to book their priority free tickets to our annual Open Day from 12.00 midday on Thursday 26 June. Members will be notified with details of how to book their places by email or post.
Any remaining tickets will go on sale on a first come, first served basis to non-members from Thursday 26 July at £27 per adult, £10 per child.
The biggest nystagmus event of the year takes place on Saturday, 29 September in Birmingham. This is our annual Open Day, where 200 nystagmus families get together to talk about research, education, support, assistive technology, mobility, education and general day to day living with a visual impairment. The Nystagmus Network is seeking sponsorship from commercial organisations. If you’re interested and would like to find out more, please contact us today.
Priority booking for free tickets to charity members opens at 12:00 on Thursday, 28 June, with any remaining tickets going on general sale from 26 July.
Over 170 people travelled to the Hilton Hotel, Reading on Saturday 7 May for the Nystagmus Network’s annual Open Day 2016. Among them were parents, their children, adults with nystagmus, clinical and research experts, exhibitors and speakers, charity trustees and volunteers, the lovely ladies from the Facebook group ‘Wobbly Days for Nystagmus Families’ and two very well behaved dogs! Nystagmus Network Chair, Richard Wilson, kicked off the event with an ice breaker designed to ensure that everyone had the opportunity to meet another parent, adult or child with nystagmus and also the clinicians and medical researchers who joined us at our Open Day.
Keynote speaker Kristina Venning sought to allay the worst fears of parents with newly diagnosed children as she highlighted the successes of her career in the media.
The well attended and ever popular breakout sessions covered such varying aspects as living with a family member who has nystagmus, building a positive relationship with your child’s school, applying for benefits and the world of work.
Nystagmus Network Information and Development Manager, Dan Lewi, seized the chance to launch the charity’s brand new look, with a new website and logo. Both were received to great acclaim and clearly signaled a new direction and a more positive outlook on the future for nystagmus sufferers everywhere. Photos from the event can be found on our Flickr page here.