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.
Come along to the forum
As part of the Nystagmus Network virtual Open Day 2020 we will be hosting a series of zoom chats on Saturday 3 October.
For parents
There will be a virtual parents’ forum at 2pm. Share experiences, make new friends. This session will be led by Marie Travers, herself the parent of a child with nystagmus.
For adults with congenital nystagmus
There will be a virtual adults’ forum for people living with congenital nystagmus at 3pm. Meet others, make new friends, share experiences. This session will be led by Daniel Williams, an expert in accessible employment who himself lives with sight loss.
For adults with acquired nystagmus
Professor Chris Harris from the Royal Eye Infirmary, Plymouth will be answering your questions on Acquired Nystagmus and Oscillopsia at the virtual adults’ forum for people living with acquired nystagmus at 4pm.
Visiting a High Street Optometrist
What happens when you’re discharged from the hospital eye clinic and need to visit an optician’s on the High Street?
Can staff on the High Street really support you with your sight if you have nystagmus? Can they prescribe the right glasses or contact lenses for you?
In their presentation for the Nystagmus Network virtual Open Day 2020, Optometrist, Sarah Arnold and Dispensing Optician, Jayshree Vasani answer these and many more of your questions about the services available at your local optician’s.
Register here to view all Open Day presentations
Sometimes we all need more marshmallows
In her presentation for the Nystagmus Network virtual Open Day 2020, Alison Blackman QTVI will talk about resilience and how to boost it.
Resilience is the ability to overcome adversity, reduce stress and bounce back from setbacks. In her presentation, Alison explains how to boost resilience in young people with nystagmus.
She talks about the need we all feel from time to time to have an extra layer of padding around us to keep us feeling confident and protected.
Find out how you can help a young person with nystagmus feel more like marshmallow man.
Register to see all Open Day presentations here
Chris addresses Acquired Nystagmus and Oscillopsia
Nystagmus researcher and clinician from the Royal Eye Infirmary, Plymouth, Professor Chris Harris, will be talking about the causes, potential treatment and his further research into Acquired Nystagmus and Oscillopsia at the Nystagmus Network virtual Open Day 2020.
You can hear this and all the other presentations by registering now for the Nystagmus Network virtual Open Day 2020.
Please register here to receive the programme
Can I tell you about nystagmus?
Can I tell you about Nystagmus? is a guide for friends, family and professionals by Nadine Neckles (illustrated By Vikas Upadhyay).
Sue from the Nystagmus Network talks about Nadine’s book here.
In this friendly guide, a girl called Amber explains all about her ‘dancing eyes,’ or nystagmus. Amber explains how children with nystagmus might need to read, learn or play differently, and what their families, school and friends can do to help. She invites readers to learn the causes and symptoms, to help others understand the condition and help increase the self-esteem and confidence of those who have it. This accessible guide for children aged 7+ is an excellent starting point for parents, teachers and other professionals working with children with nystagmus. It includes a practical checklist of easy adaptations to make school or home environments easier and more enjoyable for children with nystagmus, as well as a helpful list of recommended resources for additional support.
You can order your copy of Nadine’s book here
Night in with the Nystagmus Network
Virtual Open Day 2020, on Saturday 3 October, will close with A Night in with the Nystagmus Network, a virtual supper party for members and invited VIP guests.
This is a fabulous opportunity to meet, chat and network with nystagmus experts, guest speakers and presenters, supporters and members of the Nystagmus Network whilst enjoying a relaxed meal.
Diners will be entertained by our guest speaker, nystagmus hero, Mike Larcombe, who joins us all the way from Australia, following the successful completion of his Walk for Wiggly Eyes. You can watch the highlights of the walk here.
Members registering for this event will receive
- a set menu to cook at home, purchase as a ready meal or order in
- a Nystagmus Network cocktail recipe (alcohol free version included)
- entry to the Nystagmus Network virtual treasure hunt
- a zoom link with joining instructions
Not a member, but like to enjoy the Night in with the Nystagmus Network and lots of other member benefits? Please join us today! Annual subscription is £25. Subscriptions help keep the charity going and enable us to continue to invest in nystagmus research.
Become a member of the Nystagmus Network here
Booking now for Open Day 2020
The Nystagmus Network has a huge variety of presentations lined up for you at virtual Open Day 2020 on Saturday 3 October.
Enjoy inspirational presentations, research updates and find all the support and information you need, all from the comfort of wherever you are.
Everyone welcome!
Due to social distancing rules still in place, we have decided to go digital! This means that you can attend Open Day 2020 from absolutely anywhere, hear all the latest nystagmus news, get inspired and soak up all the support and information you need, in comfort and safety, wherever you are.
We can promise a stellar list of speakers and presenters, and some fun activities, too, brought to you on screen.
Book your ticket here
Presentations include:
For everyone
- keynote speaker Joanne Roughton-Arnold, opera singer, founder of FormidAbility, soprano voice of Rising Phoenix and Nystagmus Network member
- research updates by key nystagmus researchers from across the UK (The School of Optometry and Vision Sciences, Cardiff University; The Ulverscroft Eye Unit, University of Leicester; Moorfields Eye Hospital, London; Royal Eye Infirmary, Plymouth; Academic Unit of Ophthalmology and Orthoptics, University of Sheffield; University of Southampton and Southampton General Hospital
- Special Education Needs support for children with nystagmus: an update on the legal position in schools in England and in Wales
- an interview and readings with Claire Entwistle, author of ‘What seems to be the trouble?’
- building resilience in young people with visual impairment, a session with a QTVI
- getting the best from an appointment with a high street optician – an optician and a dispensing optometrist explain
- DLA, PIP and nystagmus, guidance from the Nystagmus Network volunteer benefits adviser
- student finances and support services for young people with nystagmus heading to university
- exhibition of assistive technology
For parents
There will be a virtual parents’ forum.
For adults
There will be a virtual adults’ forum for people living with acquired or congenital nystagmus.
For children and young people
We’re planning some fun activities which will help our younger delegates make new ‘virtual’ friends as well as an exciting new account on Instagram.
Your virtual Open Day online quiz
Round off your day by taking part in the online quiz. Sign up to take part here.
Exclusively for members of the Nystagmus Network
The following elements of Open Day are open to members of the charity only. If you would like to enjoy full member benefits and privileges, please join us today. Annual subscription is £25.
Phone appointments
Members of the Nystagmus Network will have the opportunity to book timed telephone appointments with a benefits adviser or an education advocate throughout the day. Places will be limited.
The annual general meeting
Members will also be invited to the charity’s AGM.
Night in with the Nystagmus Network
The day will close with A Night in with the Nystagmus Network, a virtual supper party for members and invited VIP guests. Members registering for this event will receive a set menu to cook at home, purchase as a ready meal or order in, a Nystagmus Network cocktail recipe (alcohol free version included), entry to the Nystagmus Network virtual treasure hunt and a zoom link with joining instructions. Diners will be entertained by our guest speaker, nystagmus hero, Mike Larcombe, who joins us all the way from Australia, following the successful completion of his Walk for Wiggly Eyes. You can watch the highlights of the walk here.
Booking opened for members on 20 August 2020
Meanwhile …
Watch the highlights of OPEN DAY 2019 here.
Book here for Open Day 2020
Joanne sings for the Rising Phoenix
The voice of Nystagmus Network member, acclaimed soprano and Open Day 2020 keynote speaker, Joanne Roughton-Arnold features in the inspirational documentary, Rising Phoenix, a Netflix production charting the history of the Paralympic Games through the personal stories of some of the sports stars themselves.
Described by Daniel Pemberton, the film’s musical director as “an incredibly talented partially sighted opera singer”, Joanne, who has nystagmus, says it was “a privilege to be part of this immensely powerful film”.
Joanne sings the theme to Paralympian, Bebe Vio’s story. The medal winning fencer is known as ‘the rising phoenix’.
Watch the official trailer of Rising Phoenix here
Night in with the Nystagmus Network
The Nystagmus Network virtual Open Day takes place on 3 October, with presentations, workshops, forums and fun for everyone.
The day, full of support and information and everything nystagmus, draws to a close in the evening with the spectacular Night in with the Nystagmus Network, a virtual supper party with an amazing guest speaker.
Night in guests (members of the Nystagmus Network and invited VIPs) will receive a set menu to prepare at home, purchase as a ready meal or order in, the recipe of the Nystagmus Network Cocktail (with an alcohol free version) and your entry form to the Nystagmus Network virtual Treasure Hunt. From 7.30pm onwards you will enjoy the company of your fellow dinners and some special announcements along the way. Plus you will be entertained and inspired by your very special guest speaker, the fabulous Mike Larcombe.