OPEN DAY 2022 – Saturday 1 October, The Cutlers’ Hall, Sheffield
We’re BACK, we’re LIVE and IN PERSON for our first face to face Open Day since 2019. We promise you a packed programme of fabulous speakers, research updates, presentations, Q+A panels, workshops, activities for the kids and, most important of all, the chance to meet other people living with nystagmus.
The Nystagmus Network’s annual Open Day is the biggest nystagmus event in Europe.
Our keynote speaker – Joanne Roughton-Arnold
Joanne Roughton-Arnold is an opera singer, founder of FormidAbility and the soprano voice of Rising Phoenix. Joanne also has nystagmus and is a member of the Nystagmus Network. We are delighted that Joanne is able to join us in Sheffield for Open Day 2022 as our very special guest. She will tell us about growing up with nystagmus and share her thoughts on pursuing a career in the performing arts as a visually impaired person.
Amanda Harris – “She will never …”
First time author, Amanda, is about to publish her candid and hilarious story of life with nystagmus on World Vision Day 2022. Amanda joins us to talk about her nystagmus journey, read an extract from her book “She will never …” and share with us her positive mindset.
Harshal Kubavat on research
Originally a volunteer with the Nystagmus Network, Harshal is now a fully fledged trustee with a keen interest in research. He has a 6 year old child with nystagmus. Hear Harshal report on the charity’s latest involvement at the cutting edge of nystagmus research.
Our VIP guests
We will be joined on the day by experts in the fields of nystagmus research, education, employment, benefits and much more. There are often a few surprise guests, too, but our most important guests are the Visually Impaired People themselves.
‘Meet your tribe’
People attending Open Day often tell us that the very best bit is meeting other people living with nystagmus. For one whole day you don’t have to explain nystagmus, because everyone already understands. We’re giving you the chance to get together, share experiences and help each other live better with nystagmus. There will be discussion groups for parents and for people living with congenital or acquired nystagmus.
The Research Hub
Meet nystagmus clinicians and researchers, talk to them about their latest work and ask them anything you like. This really is your opportunity to find out all you can about nystagmus, current thinking and future developments. The Research Hub will be open all day.
Benefits and Education
Nystagmus Network volunteer benefits adviser, Mike Hughes will be available all day to help with benefits queries and questions, whilst Claire and Hanni from the Nystagmus Network team will be on hand to offer information and advice about nystagmus and education.
Visit providers of low vision aids and assistive technology equipment, try out their wares for yourself and source the best deals. Meet the colleges and national and local providers of support services. Explore!
For children and young people
Vicki will be running fun drama activities for the children and young people to join in with, giving them lots of opportunities to make new friends and meet others who have nystagmus just like them and Vicki!
What’s Open Day like?
You can see a quick reminder of everything that happens at a Nystagmus Network Open Day be watching a short video of our most recent in person Open Day at the Millennium Stadium, Cardiff in 2019.
The Nystagmus Network Open Day is your chance to meet other adults, children and families living with nystagmus, share experiences, hints and tips and make lifelong friends.
There will be inspirational speakers, presentations from the leading UK nystagmus research and clinical teams, lots of fun for the children, interactive activities, forums and workshops on mobility, education, technology and benefits.
Meet Nystagmus Network members, trustees, the staff team and our volunteers.
Places are limited. Priority booking for members of the Nystagmus Network continues.