Nystagmus Network’s Sue Ricketts travelled to Birmingham last week for the annual conference of VIEW, the national body representing Qualified Teachers of Visually Impaired children and young people (QTVIs).
Delegates were treated to presentations on the latest thinking on special educational teaching and support, including responses to the recent SEND reforms.
Sue was part of the exhibition, ensuring that teachers and support staff had all the resources they needed to signpost families to the Nystagmus Network for support and information. There was overwhelming praise for our digital guides, with ‘Wobbly Eyes‘, the booklet for young children, again proving the most popular, followed closely by ‘Nystagmus and Driving‘ and Sue took the opportunity to introduce our latest publication, the Nystagmus examsguide.
There was lots of interest, too, in our online book shop, featuring ‘Can I tell you about nystagmus?’ by Nadine Neckles and the newly published ‘She will never…’ by Amanda Harris.
In the run up to Nystagmus Awareness Day on 20 June, with our 2023 theme ‘Share your nystagmus story’ we are making available lesson plans and Powerpoint presentations for teachers and their pupils. We hope that these resources will not only raise awareness of nystagmus in schools but also help children and young people living with nystagmus feel better understood and more included.
A Nystagmus Champion is someone who goes above and beyond to raise awareness of the condition, to raise funds or generally make life better for people living with nystagmus.
The Nystagmus Champions of 2022, announced at our virtual Open Day on 1 October are:
Lucy
Mum to Maisie and partner to Myles, we’re sure it’s no surprise to them that Lucy has been nominated as a Nystagmus Champion for her baking skills. We’re no Paul or Prue, but we know that there must be something very special about Lucy’s cakes and about Lucy, herself. Earlier this year, Lucy took on a 12-hour bake-a-thon, making everything from Lemon Drizzle cake to chocolate brownies. She did get Maisie’s nursery to join in, too, but baked most of the cakes herself, making full use of her two ovens at home. She raised a lot of awareness and a phenomenal £2,000. Well done, Lucy! And thank you!
Khalil
Back in June we took a call from an enthusiastic young man. He said he’d like to take part in Nystagmus Awareness Day and could we please send him some T-shirts. This was Khalil. As we chatted, he revealed that he had nystagmus himself. He also shared that he was the Assistant Manager of the Leicester branch of Specsavers. What a tremendous achievement! Khalil has been nominated as a Nystagmus Champion of 2022 for persuading his entire staff team to wear Nystagmus Network T-shirts and wristbands on Nystagmus Awareness Day and sharing the photos across the local press and social media. Thank you, Khalil. We are so grateful for your support.
Tracy
2022 was not the first time that Tracy chose to do something energetic for the nystagmus cause. But this time it was particularly strenuous. She took part in the full Ironman. If you’re not sure what that is, it’s a 2.4 mile swim, followed by a 112 mile bike ride, followed by a 26.2 mile run. Yes, that’s right. That last bit is a marathon! Despite picking up a knee injury in training, Tracy completed the challenge and raised £1,500 in the process, making her family and especially her son, Alfie, very proud indeed. Thank you, Tracy for all the energy. You are a Nystagmus Champion.
Charlie
7-year-old Charlie has nystagmus. He’s also a huge football fan and one to watch for the future, we think. When his cub team were looking for sponsorship for their kit, young Charlie decided to write to his Mum’s bank. They would have plenty of money! Luke, the bank manager took part in a triathlon and raised the sum needed, but then he asked Charlie to nominate a charity whose logo should appear on the kit. And this is how the boys got their Nystagmus Network sports tops. And don’t they look smart! We’re not sure how the tops have helped with goal scoring, but we’re sure that Charlie has a stellar career ahead of him. Congratulations, Charlie.
Following the announcement of a further national rail strike on Saturday 1 October, charity trustees have been obliged to take both Open Day and the AGM online. Notice is hereby amended that the Annual General Meeting (the “Meeting”) of THE NYSTAGMUS NETWORK (the “Charitable Incorporated Organisation or CIO”) will be held online on Saturday 1 October 2022 at 1:45pm.
Members have been emailed the revised agenda which includes the Zoom link to join the meeting. Members have also already received a copy of the Annual Review 2021, including the signed accounts and the minutes from last year’s meeting. If you are unable to attend the meeting online and would like to vote by proxy, please email us at [email protected] to confirm.
Thank you.
On behalf of Tim Cuddeford Chair of Trustees, Nystagmus Network
If you would like to join us as a member and enjoy the right to vote as well as other member-only benefits, please visit our membership webpage. Thank you.
In the historic grandeur of the Cutlers’ Hall, hear the latest thinking on nystagmus support, research and treatment, meet clinicians face to face and ask anything you like, seek one-to-one advice on education, employment or benefits, hear fabulous speakers and, most importantly, meet people living with nystagmus.
For one whole day you don’t have to explain nystagmus!
As part of the long weekend 2-5 June, to celebrate the Platinum Jubilee of Her Majesty the Queen, the Nystagmus Network is inviting members of the nystagmus community to join us for our very own virtual big lunch.
Let’s all get together!
Whether you’re lunching at home in the garden, in your street or a local park, whether it’s a barbecue, a sharing platter or cucumber sandwiches and Jemma’s lovely Platinum Pudding, please share your photos with us and join the rest of the nystagmus community for lunch.
We’ll share your photos on our Facebook page to show that we all belong to the nystagmus community.
Researchers, clinicians and students working in the field of nystagmus research are invited to attend this free international event, hosted by the Nystagmus Network on Friday 24 June 2022.
Abstracts submissions
If you would like to deliver a 15 minute presentation on your work in nystagmus, please submit an abstract. We welcome topics leading to the advancement of our understanding of nystagmus, including (but not limited to) diagnostics, genetics, treatments and therapies, management and support.
Successful applicants will be required to deliver a 15 minute presentation of their work, in person or online, and be prepared to answer questions. Presentations should be in PowerPoint.
Registration
Delegates are invited to attend in person or online. There is no registration fee, but please note that you are required to cover all your own expenses if attending in person. Please register below. Thank you
Please note that this event is strictly for researchers, academics, clinicians and students in the field of nystagmus research only – thank you.
Thanks to a grant from our friends at the Thomas Pocklington Trust, the Nystagmus Network is delighted to be able to offer parents and carers of children and young people with nystagmus the opportunity to attend one of a brand new series of Parent Power webinars.
Each webinar, led by Karen, from IPSEA (the Independent Provider of Special Education Advice), supported by the charity’s volunteer education advocate, Claire and Sue from the staff team, introduces parents to the special educational needs support available in schools and early years settings and empower you to access it for your child. We’ll even introduce you to EHC plans.
The one day webinars (10am to 2.45pm) are FREE.
Places on the next February workshop are open for booking.
Members of the Nystagmus Network can request advice from our volunteer education advocate, Claire or ask for a referral to our Education Advocacy Service for one to one support with casework.
Thanks to a grant from our friends at the Thomas Pocklington Trust, the Nystagmus Network is delighted to be able to offer parents and carers of children and young people with nystagmus the opportunity to attend one of a brand new series of Parent Power webinars.
Each webinar will introduce parents to the special educational needs support available in schools and early years settings and empower you to access it for your child. We’ll even introduce you to EHC plans.
Each session will be led by Karen, a qualified and experienced trainer from IPSEA (the Independent Provider of Special Education Advice), supported by the charity’s volunteer education advocate, Claire and Sue from the staff team.
The one day webinars (10am to 2.45pm) are FREE and will be held online from November, 2021 through to March 2022, so there’s bound to be one that suits your schedule.
Places on the next two workshops are already open for booking.
Members of the Nystagmus Network can request advice from our volunteer education advocate, Claire or ask for a referral to our Education Advocacy Service for one to one support with casework.
Nystagmus Network Vice-chair, Peter Greenwood, was delighted to announce the ‘nystagmus champions’ of 2021 at the end of Open Day party on 25 September.
Tyler Urquhart The Urquhart family are, quite literally, tireless supporters of the Nystagmus Network. This year they walked ran or swam 200km over 30 days. Everyone took part, even the dog! We like to encourage children and young people to own their nystagmus and help us raise awareness on Nystagmus Awareness Day. 11-year-old Tyler always goes one better than that. In previous years he’s organised a sponsored school walk and a quiz and even approached local businesses for prizes for the winning and losing teams. This year he was hard at it once again, manning a stall in his Nystagmus Network T-shirt, helping his family smash their £250 fundraising target. We hear he did a lot of the running, walking and swimming, too! Well done, Tyler.
Sarah Mills There aren’t many people in Derbyshire who haven’t heard of nystagmus. That’s all down to one woman, Sarah Mills. Sarah has been running for the Nystagmus Network for a number of years and achieving some really great press coverage along the way. This July she excelled herself, completing the Peak District Ultra Challenge – 100km in 24 hours. Not only that, but she persuaded scores of local businesses to donate raffle prizes, too. Sarah has raised over £2,000 this year, for the nystagmus community and for her beautiful daughter, Delilah.
James Singleton We first heard from James when he contacted the charity in December 2020 to let us know he’d signed up for the 19-21 challenge. James’s challenge was to run 300km in January 2021. He was doing it for his son, his ‘little champ’. This being James, he got a whole lot of mates involved. There weren’t many people in Jersey who hadn’t seen a bright blue T-shirt go flashing past by the end of the month. Together they raised over £1500. In June 2021 James was at it again, running the Canaccord Half Marathon in Jersey, with his sister, Laura. Together they raised another £680. In September James held a Nystagmus Network charity day at his golf club. James and his fellow golfers raised over £5,000 and a very good time was had by all.
Thank you to all three of our Nystagmus Champions of 2021 and to all our wonderful supporters.
