A desk with an open laptop, plant and coffee cup.

Understanding your experiences of nystagmus

You are invited to participate in a research study titled “Understanding the Experiences of Individuals with Eye Movement Disorders.” This study aims to explore the lived experiences, challenges, and perspectives of individuals living with eye movement disorders.

The Principal Investigators are Dr. Brian Le Lay CUNY School of Professional Studies, City University of New York and  Dr. William Keith, University of Wisconsin-Milwaukee

By sharing your experiences, you can contribute valuable insights that may help improve awareness, treatment options, and overall quality of life for individuals living with these conditions.

If you agree to participate, you will be asked to complete an initial online survey that will ask you about your background, vision, and general experiences related to your eye movement disorder.

Follow his link to consent to take part


Seeing Beyond The Eyes

The Nystagmus Network is pleased to share this guest post from our friends at Visualise Training and Consultancy. The new guide ‘Seeing Beyond The Eyes’ includes details of the charity’s services and our contact details so that patients with nystagmus can find us easily for information and support.

Eye care and Health Professionals armed with information to improve lives of patients with sight loss

A free resource pack for eye care and health professionals containing valuable information on sight loss support services, charities, equipment and referral pathways has been produced by Visualise Training and Consultancy  with the support of Thomas Pocklington Trust.

The pack complements the ‘Seeing Beyond the Eyes’ CET workshops  currently touring the UK which raise awareness of the difficulties faced by patients diagnosed with irreversible sight loss. It contains valuable information on local sight loss charities, Eye Care Liaison Officers (ECLO),Vision Rehabilitation Workers, low vision assessment services and Habilitation Workers. It also lists national organisations supporting people with sight loss and condition specific charities. Daniel Williams of Visualise said “It is vital patients with sight loss are referred immediately to sight loss services that can enable their independence and help them deal with a difficult time in their life. However Optical professionals can’t refer if they don’t know who they are referring hence why we have created such a resource pack and training roadshow.At the age of 8, I was diagnosed with Retinitis Pigmentosa, a gradual loss of sight, and had consultations with Dispensing Opticians, Optometrists and Ophthalmologists and at no point was I referred to any support services which is why I am so passionate about empowering eye care professionals with the awareness of what is available for people with sight loss to live independent lives”

Links to professional resources are also included such as the Government’s Access to Work grant scheme, an A – Z list of eye conditions and Thomas Pocklington Trust’s guide to designing a home for someone with sight loss.

Charles Segal, Dispensing Optician from D and H Hantman Optometrists said “It was one of the best CET courses, I have attended. “I had no idea that there was such a range of services, it made me fully aware of where we can send people and not just refer to the eye hospital. It was a highly informative meeting where the attendees actually met people who are dealing with or have dealt with people with sight loss,it was the first time I have actually met someone who has Retinitis Pigmentosa. It was moving and inspiring to hear how people with low vision get-on with their lives. The course has given me the confidence to help people who enter my practice and give them advice. The details of suppliers of low vision aids and daily living solutions are also invaluable for people facing sight loss during their transition to a different way of life”.

The pack can be downloaded free of charge by clicking here

For more information on Visualise Training and Consultancy visit their website

A child swimming underwater.

How amazing are you?

Have you done something amazing, something you never thought possible, because you have nystagmus?
Has your child exceeded all your expectations?
If so, we want to hear from you.
Last year we heard about the fantastic swimming and fundraising achievements of Annabelle, Tyler and Poppy. This year we want to hear your stories.
Between now and 20 June, Nystagmus Awareness Day, we’re collecting all those lovely stories of adults and children who’ve achieved great things despite having nystagmus, or maybe even because they do.
We’ll feature all the best stories right here on our blog and on our Facebook page, so everyone can celebrate with us your amazing nystagmus successes.
If you’d like to help us to support everyone with nystagmus to be amazing, please text ZING18 £5 to 70070. Thank you.
Please complete the form to let us know about your amazing nystagmus success story.
People stand at a clinic reception holding Nystagmus Network balloons.

Nystagmus Awareness Day – for clinics

Please help us to promote national and international Nystagmus Awareness Day, on Wednesday 20 June, in clinics and hospitals all over the UK and the world.

We have free to download PowerPoint presentations which can be displayed on a screen in reception. We also have a free bunting template.

For those organising a fundraising event, we also have posters – and don’t forget your bunting!

If you would like some leaflets or postcards to take into your eye clinic the next time you visit, or some balloons, please contact us.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

Nystagmus Awareness Day – for sports clubs

Calling all sports and athletics clubs – we want you to join us for ‘nystagmus in the open‘ on national and international Nystagmus Awareness Day on Wednesday 20 June. We need you to help us prove that children and adults with nystagmus can take part in sport and fitness, despite their visual impairment. So please organise a fun sports day or a try out session at your local club or recreation ground and invite everyone to come along. We have free flyers to help you publicise your event. There is even a free bunting template. But if you would like some balloons, you will need to contact us, please.

Last year, with the ‘nystagmus big swim’, we proved that people with nystagmus can be amazing swimmers. Our nystagmus water babies also helped us raise a lot of money through sponsorship. You can help us achieve the same success this year.

Thank you for your support.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

Nystagmus Awareness Day – for snow men!

Whilst we are all looking forward to the very first Nystagmus Awareness Day in the summer – on Wednesday 20 June – for those of you who miss the old days, when Nystagmus Awareness Day was celebrated in November, you can get this year’s ‘Wobbly Week’ off to a great start by coming sledging or skiing with us at the Snow Dome, Milton Keynes.

Jamie Fuller, from the Outspan Rebels VI ski team, is organising the first of two amazing Nystagmus Network Snow Camps. It takes place on Sunday 17 June.

There will be skiing and sledging for adults and children with nystagmus, their fully sighted parents, siblings and friends. Everyone is welcome to come along. Each session costs just £10 per person.

Charlotte Evans MBE will be there on the day along with Jamie and the Outspan Rebels, themselves. There might even be a few very special visitors!

It is sure to be a great day. So please join us if you can. To register your interest, please contact us.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

Monday Focus on Facebook

Every Monday over on our Facebook page we focus on a particular nystagmus-related topic to get the week started with a great conversation.

Topics we have covered so far have included null point surgery, driving and nystagmus, talking to you child about nystagmus and whether or not to have cataracts removed when you have nystagmus.

Anyone can join in the conversation and share their thoughts, questions, experience and point of view.

My bouncing eyes baby!

Hello, my name is Charlotte and I am mother to a ridiculously delicious six year old girl named Scarlett. In every way Scarlett is a picture of happiness and joy. She needs very little to keep that big smile spread firmly across her angelic face, literally affection and biscuits will do the trick! I am very proud and also very lucky to have Scarlett in my life. Each day she is just a mass of love and giggles, always with a song to sing.

Scarlett, despite being pleased by the simple things in life, is medically very complex. Diagnosed at four and a half months with Optic Nerve Hypoplasia, Scarlett has no useful vision. When she was first born I do recall the frequent movement of her eyes. I also remember telling myself it is because she is curious, she is taking in the world, or whatever subject was trying to grab her attention,but this just didn’t quite cut it. I told myself that for many weeks, until one day yet another person highlighting the fact that Scarlett’s eyes never really fixed on anything and constantly danced around became too much to ignore. I took her to Bolton Eye Hospital for further investigation. We were told that her eyes moved around due to Nystagmus and that her sight was affected due to an under development in her optic nerve and that perhaps her sight may improve slightly, but I was relieved to find it would not deteriorate any further. Due to Scarlett’s age we did not know what sight she had, if any.

As she has grown older, Scarlett has given us no indication that she has any sight. She has additional needs which affect her social interaction and communication and her learning. Therefore, she has yet to confirm if she sees anything through her big blue bouncers. I suppose I have become accustomed now to the unknown: whether she can see, whether she can talk, whether she will ever function cognitively at a level appropriate for her age. Of course I get asked, by family, other children and strangers. I have also become accustomed to saying ‘I don’t know’.

Despite the complexity of my daughter and the gorgeous enigma that she is, I can say one thing for sure that she is truly happy. She has no awareness that she is any different and exists within a beautiful bubble all of her own.

Through being the parent of such a special little girl I have been on lots of adventures! My involvement and my full time job is running the online support and information network for charity VICTA Children.

Throughscarlettseyes.com was born out of my desire to want to help and seek support from families who were also raising visually impaired children. The network/community has been live now for three and a half years and continues to grow every day. Not only do I share my own personal experiences about Scarlett, but I offer an online platform to parents, carers, professionals, charities and organisations and people with a visual impairment to publish anything they wish! This has been a great experience for me and I have met many fantastic people along the way, people who have helped during the hard times, inspired when you feel like you are standing still, been a shoulder to cry on and I’ve heard some exceptional stories from which I have found such strength.

I have learnt that you might not always know what the future may hold, but that’s okay as no matter what plans you lay or expectations you have, you only have this one moment and you need to keep pushing to make it the best moment yet.

An inspiring story about passing exams!

We wanted to begin 2017 by sharing a good news story by Meg Tatton which we hope will inspire other parents and show that there should be no barriers in the classroom.

Meg’s ten year old daughter, Lily, has recently passed an entrance exam and won an academic scholarship thanks to the support she received from Nystagmus Network Trustee and Education Advocate, Frances Lilly and Rory Cobb of the RNIB.

When Meg first approached the school and the QTVI, there seemed to be little advice or information available about adaptations and support for Lily to take the test. Could it be that some teachers do not expect children with a visual impairment to have aspirations to become academic high flyers?

What began as a two paragraph note from the QTVI about, among other things, blowing up the test papers on to A3 paper, ended as a four page document of detailed instructions on how different parts of the examination, including a multiple choice test on the computer, could be adapted and made accessible for Lily, in particular being printed on manageable A4 pages, giving her an equal opportunity to succeed alongside her fully sighted class mates.

“The opportunity to discuss the exam with Frances and Rory was invaluable. I could voice my concerns and they helped me to identify issues and offer suggestions/solutions to the school. It also gave me the determination to make sure that Lily had an equal chance when sitting the exam.” – Megan

Lily is a confident girl and was not sure that she would need the 25% additional time she was entitled to. This is not uncommon among VI students who do not want to appear to their friends to have any kind of special need. Like many other parents, however, Meg managed to convince Lily that the time could be very useful to her and could be used to check her answers and make sure she had not missed out any questions.

On the day of the test Lily triumphed. There was a slight hitch with the computer screen and Lily admits that she may have had to guess the answers to a couple of the multiple choice questions, but she passed. This ambitious young lady is now set on a path of high academic achievement thanks to her Mum, the RNIB and the Nystagmus Network.

If you or your child have a similar experience to Lily and Megan, or would like to share a story with the nystagmus community please get in touch with us!