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You've been sensational!

As Nystagmus Network chairman, Richard Wilson, brought Open Day 2017 to a close he couldn't resist sharing a heartfelt thank you to everyone who came along, at the end of what proved to be an emotional day for many.   .

From the moment he and fellow trustees, new and long standing, welcomed the first guests through the door of the Macdonald Burlington Hotel in central Birmingham there was a real buzz of excitement in the air.
 
What did the day have in store? There were connections to be made, aspirations to be raised, the very latest news from our research teams from across the UK, a keynote speech like no other and a world film premiere. Small wonder, then, that by the end of the day emotions were running high.

"The whole day from beginning to end was informative, helpful, funny and a great opportunity to chat with other parents."

Adults with nystagmus attended a workshop all about ‘making connections’. Their speakers were Flora Raffai, CEO of Camsight who outlined how to make the most of low vision support services in your local area. Flora was followed by Glen Turner, whose blog Well Eye Never has inspired many to live life to the full, despite having a visual impairment. Finally, delegates were able to try firsthand the latest low vision technology sweeping the United States and now available in the UK: the e-sight glasses, thanks to Ian Hughes from Associated Optical.

"Wil is an amazing role model. I will try to use less bubble wrap in future!"

Parents of children and young people with nystagmus heard a presentation from Rory Cobb, who has a life time's experience of working in the field of education, supporting children with low vision, and Sue Keil from RNIB. Next two parents, Sue and Sara, shared their experiences of supporting their own children through school. They were followed by two young nystagmus role models, Sophie, writer of the blog, Nystagmus in a Nutshell and Wil, a Community Rugby Coach with Warrington Wolves. Wil has already led a match day experience event for Nystagmus Network families. Judging by his popularity at Open Day, we think we can keep him very busy for years to come.

"The children were lovely. I'm amazed that they didn’t all know each other because they got on so well."

Children aged 5 to 15 were invited to join their very own workshop where they worked together on a huge rainbow piece of art. Claire, Wendy and Bizi from Oglee Poglee were ably assisted by Trustees, mother and son, Vivien and Sam Jones. Claire praised the two of them for their help and for 'getting so stuck in' to the art!

"Thank you to all the organisers and brave speakers today, you were all wonderful."

Because last year you told us you needed more time to network, we extended our lunch break in Birmingham to allow everyone time to meet up with old friends and make some new ones, sign up to take part in research projects with Moorfields and Cardiff, meet our researchers and our trustees and ask them your burning questions, as well as enjoying Dave Brogan's photography exhibition, chatting with Louise from Eye See or Hazel and Wendy from Guide Dogs, and attending one to one surgeries with Frances and Mike, our education and benefits experts.


"Thank you so much for this informative, empowering and inspiring day!"

The afternoon conference began with presentations from representatives of all six of our UK nystagmus research partner institutions, Cardiff, Leicester, London, Plymouth, Sheffield and Southampton. If you weren't able to attend Open Day you can catch up with all the presentations on our blog

At 3pm it was time for Richard to welcome to the platform our fabulous keynote speakers, Jamie Fuller and his 14-year-old son, Joshua. Their story is literally an emotional roller coaster ride, telling as it does how young Josh refused to be deterred, despite his sight difficulties, from his dream of becoming a ski racer. For Josh, with his Dad behind him, there really are 'no limits'. Jamie has gone on to found the Outspan Rebels VI ski team and has run the Nystagmus Network's first ever snow camp.

"It meant so much for me to have the film screened for the first time to a Nystagmus Network Open Day!"

The final item on our agenda was a true world exclusive, the first ever public screening of a brand new film about nystagmus. The charity is honoured and privileged to have been granted permission to show this very personal and emotional story, which will have resonance across our community and beyond. The film is the story of world renowned photographer, David Katz. David has nystagmus and is a member of the Nystagmus Network. His film is entitled Through my Lenses.

"The comments that have come from fellow members both on Facebook and privately have inspired me even more to take this forward ... " David Katz

We shall be doing it all again next year on Saturday 29 September. Save the date!

Employment opportunity with the Nystagmus Network

If you would like to help make Open Day 2018 a big success, as well as supporting the work of the charity throughout the year, you might be interested in applying for our current vacancy for an Information Support Officer.

Get in touch!

If you need any help or support with nystagmus or would like to share your nystagmus story you can get in touch with us here.

Have a great day from everyone at the Nystagmus Network!
Who is the Nystagmus Network?
The Nystagmus Network has been providing support and information about nystagmus for over thirty years. The charity supports families affected by the condition and has been at the forefront in funding the research to find effective treatments. 
Donate here
Copyright © 2017 Nystagmus Network, All rights reserved.

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