Tag: Nystagmus Awareness Day

Sue wears a Nystagmus Network T-shirt and sits at her exhibition table.

Sue at VIEW

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 exams guide.

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.

Nystagmus Champions of 2022

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

Three images, showing Lucy holding her daughter; Maisie smiling at the camera and some chocolate cake.

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

A group of people wearing Nystagmus Network T-shirts standing with their backs to the camera outside a branch of Specsavers.

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

Tracy wearing a Nystagmus Network T-shirt, posing for the camera with her son.

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

Charlie with members of his football team outside the football club, wearing their Nystagmus Network branded sports tops.

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.

A row of people stand outside Specsavers wearing Nystagmus Network T-shirts.

Leicester optician puts nystagmus in Focus

Having nystagmus hasn’t stopped Leicester’s Khalil Musani from forging a career in optics and helping others look after their eyes

When Khalil secured a Saturday job at a Leicester opticians in 2017 it proved to be the catalyst to fulfilling his ambition to work in optometry. 

Now, aged 21, and assistant manager at Specsavers Leicester, Khalil wants to raise awareness of nystagmus, the condition he has lived with for most of his life, alongside building a career in optics.

On Nystagmus Awareness Day 2022, Khalil and his entire staff team donned Nystagmus Network T-shirts and wristbands to raise awareness of nystagmus and support the work of the charity.

For his tremendous support, raising awareness of nystagmus and to honour his career success, the Nystagmus Network has nominated Khalil one of the ‘nystagmus champions’ of 2022. Join us to celebrate Khalil and all the nystagmus champions of 2022 at Open Day.

Khalil’s inspiring story has been told in local press articles in print and online.

Read a Leicester Times article online here

A group of researchers.

Perceptions of nystagmus and the impact of the Covid-19 pandemic

Impact of the COVID-19 pandemic on individuals with nystagmus
and an exploration of public assumptions about the condition: an electronic questionnaire study

The study explored the self-reported impact of the COVID-19 pandemic on those with nystagmus, and examined both public understanding of how nystagmus affects people who have it and the perceptions of public understanding by those with the condition and their carers.

In conclusion, the study highlights the lack of public awareness of nystagmus and suggests opportunities to increase awareness without the need for extensive knowledge of the condition. The COVID-19 pandemic has posed additional difficulties for those living with nystagmus, which is likely to be comparable among those with similar ocular disorders.

Jay Self, a member of the team behind the survey, says: “Perhaps the most important message is that people who even loosely know someone with nystagmus or even those who have heard of it, tend to have a much greater understanding of the problems faced by those with nystagmus meaning that perhaps very soft things (like Richard Osman talking about it on the radio, for example) could be done to improve public awareness and appreciation without the need for the whole populous to have been to a seminar on it.”

Sue Ricketts from the Nystagmus Network, also involved in the survey, says: “It just goes to show that raising awareness of nystagmus, such as by marking Nystagmus Awareness Day each year, really does have an impact on the lives of people living with this condition.”

Read the full research article online here

Thank you to those members of the nystagmus community who took part in the survey and shared it with their wider circles.

The hands of someone working at a desk.

Nystagmus awareness at work

A guest post

After my first proper job following university, I decided to ‘come out’ about my disability and support needs. I was worried this might make me stand out for the wrong reasons, but felt it was important to be my own advocate.

It was a positive move and I get lots of support and adaptations at work in my new job.

But, with remote working, I felt I was ‘back in the closet’.

Homeworking has been a revelation. It suits me so much better. There’s no commuting and the stress of getting my train, more screen breaks and no setting up the desk each day. I’m all set up at home with lots of natural light and my big screens. No hot desking!

The downside is that people are no longer seeing me every day, passing my workstation. On Zoom they don’t notice my eye movements, my head turn, they can’t see the large print papers on my desk or my wide screens. People have forgotten I have nystagmus.

I’ve found it something of a demeaning experience to have to go through it all again with my manager and my teammates, but the positive outcome for me is that home working is considered a reasonable adjustment and is now written in to my contract.

My message is ‘don’t let people forget about us’. We’re not working for their convenience. Things can still fall through the cracks. I want to work in an environment that lets me shine.

Do you have a nystagmus at work story you’d like to share for Nystagmus Awareness Day 2022? If so, please email us at [email protected]

Download our guide to Nystagmus and Employment here

A thank you card from the Nystagmus Network showing an image of 2 boys taking part in a team building exercise.

It’s so nice to be appreciated

In 2021 the Nystagmus Network supported 591 people to come to terms with nystagmus, to find the support and information they needed. We’re even busier in 2022, as more and more people find their way to us and join the virtual nystagmus community. It’s so rewarding when the people we support show us their appreciation.

Here are just some of the lovely things that people are saying about us:

About our Parent Power workshops: “Thank you for setting up today’s workshop. It was really helpful.” … “Thank you – it was wonderfully informative and extremely helpful. Can highly recommend.” … “Thank you so much – it was incredibly insightful and thoroughly worth the time.”

About our monthly forums: “I’ll look forward to the forum next time. It’s nice to keep in touch. It’s part of what makes the Network special.” … “It has been wonderful to hear/speak/learn from all of you and your experiences, to speak to parents with similar challenges. I look forward to attending future parent meetings. Thank you for setting this up!”

About our Information and Support Line: “Huge shout out to the Nystagmus Network for the most informative chat about congenital and acquired nystagmus. Your guidance has been invaluable.” … “Thank you so much for your invaluable advice. Please keep doing what you do.”

About our information documents: “We’re quite early on in learning about our son’s nystagmus and how it affects him and the Nystagmus Network has been so helpful so far. The resources available have explained so much.” … “ I am a big fan of your resources and have found them really helpful.” … “I’ve just read the PDF ‘Nystagmus and benefits’ and found it really interesting, thanks for summarising a lot of info in an ‘easy to understand’ way.” … “. I just wanted to let the charity know that I’ve found the PDF documents really useful so thank you.”

About our Facebook page: “Thank you for all your advice over the last few years, even though it’s taken me nearly 40 years to realise my condition. If only I had known back there I would have been in my teens and the help would have been great. You do a great job getting it out there.” … “I just made my first donation for research! I have AN and Oscillopsia. Fortunately, 12 weeks of neuro rehab with specific eye coordination exercises has helped me be able to walk and jog on the beach near my home. Each mile accomplished is taken with gratitude for the work and support that Nystagmus Network brings. Thank you for all you do!” … “Thank you for the excellent work carried out by the Nystagmus Network. Through it, I’ve learned more about how to live well with my condition in the last few years than I ever thought possible!”

On our Acquired Nystagmus away weekend: “We had a lovely time last weekend and I cannot thank you enough for all the work you put in to make this event so successful.” … “It was so lovely to meet you all in Bath and, whilst tiring for us sufferers, was a great opportunity to chat on a more personal level. We had a great connection and got on so well. I felt like we could see (and appreciate) our individual characters, despite the very troublesome nystagmus. Thank you so much for arranging this.”

Hanni negotiating a rock with two walking poles on Scafell Pike.

Hanni’s nystagmus story

Whilst the trustees oversee strategy and guide the direction of the charity, overall management and day-to-day operations are in the capable hands of our small dedicated staff team. Hanni is the newest member of the Nystagmus Network staff team. This is her nystagmus story, in her own words:

When I was diagnosed with nystagmus in October 1987, my parents were told 3 things: I wouldn’t drive, I wouldn’t go to mainstream school and I wouldn’t ride a bike. Devasting news for first time parents. But wow, have I proved those doctors wrong!

Not only did I go to mainstream school, I achieved 10 GCSEs, 4 A Levels and a 2:1 BA (Hons) in Primary Education. I secured my first job in a Montessori nursery (yes, there were lots of turned down job applications along the way, but determination got me through) and I then went on to complete a Diploma in Montessori Early Childhood and Pedagogy. My greatest achievement during this time was leading an Outstanding Ofsted inspection as Manager of a 40-place nursery. I then became a Managing Director of a small collection of nurseries, alongside 2 colleagues. I now work for the Nystagmus Network.

As a teenager I did a local paper round, on my bike. Going a familiar route and/or following my dad who would call out instructions or hazards made this possible.

I love to travel and have done so through university (teaching in India for 2 weeks), and more recently with my husband to Vietnam, Italy and Croatia. I find bright sunshine a real challenge and so I’m heavily reliant on my husband guiding me, particularly when it comes to negotiating steps and busy places.

Since having my son in 2018 (who has incredible sight), it has instilled in me how important it is to normalise disability. At three 3 and a half he is already learning how to help me: pointing out steps, describing where something is and telling me what he can see.

I take up offers of help and support, eg cane training, PIP, use of a Blue Badge and discounted theatre tickets. These make everyday life more accessible for me. 

Nystagmus is part of me and makes me who I am today. I challenge myself to do things that I know will be difficult: I travelled to Shanghai on my own to visit a friend and in 2011 I climbed Scafell Pike, with my now husband. This was an immense challenge: the uneven ground and countless steps made it particularly difficult for me.

I want to show people that having a disability doesn’t have to limit you. Yes, I have had to work harder than others but I’m proud of what I’ve achieved.

Harshal Kubavat headshot.

Thank you, Harshal

The Nystagmus Network’s newest trustee, Dr Harshal Kubavat has a young child with nystagmus. Like many parents, he had never heard of nystagmus before. After supporting the charity’s work in the research space as a volunteer for some time, Harsh joined us as a trustee in November 2021. He is now a stalwart of the research committee and also serves with the awareness team, overseeing our major events, such as Open Day as well as the research workshops and Symposium2022.

Would you like to join our trustee team?

Vivien (left) and Sue shaking hands.

Thank you, Vivien

Vivien Jones is the Founder and Honorary President of the Nystagmus Network. She started the charity in 1984 to support parents like her. Her son, Sam had recently been diagnosed with nystagmus. She could find no information about the condition and resolved to change that.

Watch the story of the Nystagmus Network on video here

Today Vivien heads a charity providing support and information to parents and adults living with congenital or acquired nystagmus across the UK and around the world.

Vivien is chair of the charity’s research committee and drives investment in new research. Raising awareness also continues to be very close to her heart. She gives talks whenever she can.

This is Vivien’s account of a talk she gave just last week:

I am a friend of Sue Darney, this year’s President of the East Grinstead branch of the Soroptimists. Sue heard me talk about the Nystagmus Network and said she’d like her organisation to support the charity during her year as President. I got a very warm reception when I talked about the origins and development of the Nystagmus Network, about how things began with a consultant telling Ian and me that Sam had nystagmus when he was three months old. I recalled how Ron Mallett of the London Refraction Hospital (now the Institute of Optometry) and I agreed it would be helpful to have a patient group to avoid the kind of information black hole which we as parents had fallen into and how things progressed from there. I told them the story of Sam – including how he progressed from wearing dark glasses with black leather side-pieces to deal with his chronic light sensitivity to getting tinted contact lenses from Guy’s when he was six or seven.  Talking about Sam’s journey and the development of the Nystagmus Network always makes me get emotional – and this talk was no exception!

It was wonderful getting the support of the local Soroptimists – they couldn’t have been kinder or more supportive.

Vivien is pictured receiving a cheque for £40 from Sue Darney

Charlie and his fellow team mmebers wearing their Nystagmus Network sports tops.

Charlie’s Nystagmus Network football team

Charlie loves football. He also loves his team. When they were short of money to pay for the under 7s new kit, Charlie had the brilliant idea of asking the local bank. Banks have lots of money, don’t they?

Charlie’s letter arrived on Luke’s desk and then Luke also had a brilliant idea. He decided he would raise the £300 the team needed and let Charlie nominate his favourite charity as the team sponsors.

Luke says: “I love football myself and this letter really spoke to me. I wanted to help. So I decided to compete and raise the money to help this cause.”

Choosing a charity was the easy bit! Charlie has nystagmus and his whole family supports the Nystagmus Network. They completed the Welly Walk last June.

Luke completed a triathlon in April, raised £300 and Charlie and his team got their smart new sports tops, complete with the Nystagmus Network logo. Well done, Charlie and Luke!

If you’d like to share your nystagmus story, for Nystagmus Awareness Day 2022, please email us at [email protected]