Celebrating National Sunglasses Day!

As photophobia is a frequent accompaniment to nystagmus and ocular albinism, we’re happy to join in a day of celebrating sunglasses and raising awareness of the importance of protecting your eyes, whether you have nystagmus or not, from damaging UV rays.

We’re enjoying some beautiful, warm sunny weather across the whole of the UK right now, but for some the sun means discomfort and it can damage your sight.

Always remember to protect the eyes from bright light, inside and out, with UV protective sunglasses (make sure you check the label before buying), caps and sun hats, parasols, canopies and window blinds.

How amazing is Bradley

We couldn’t resist one more ‘amazing’ nystagmus success story. Not everyone with nystagmus can drive, but Bradley has turned driving into his philosophy on life.

My name is Bradley. I’ve had nystagmus since birth. My parents found out about it when I was 4. As a child, I was in and out of hospitals. It was tough for me as a kid with a funny eye. I wasn’t very self conscious at the time and didn’t think I was any different to the other kids, but there were limitations and I got bullied by some kids. I never let that get me down, though. My teachers were great, making sure I was right up front in class and giving me print outs so I had everything I needed.

My family never really understood my condition. That’s still very much true to this day. I hardly know about it myself. I’ve lived with it all my life, so I don’t know any different. People ask me what it’s like, but I don’t know how to answer. I say that words on a wall become lines or scribbles to me. I can’t make them out and it tires me trying too much.  But, if I’m on a cliff and there’s buildings in the far distance, I can see them. I keep my phone close to my face. I can’t recognise faces until quite close, so, if I’m out trying to find a friend in town or in a pub, I may walk straight past them. The only way I can describe it is seeing people’s figures but no face until I get closer. Then, as if a fog has cleared, I can see them. I hate going to fast food places. I can’t see the menu, even with glasses. I find they don’t really help me much, so I spent most of my teenage years not wearing them at all.

I hated my eyes. I got to a point where I wouldn’t want to meet new people as I really didn’t like the way I looked. But all of that aside, I’ve realised I’m me and that’s all I ever need to be. I don’t need to be afraid of what people think.

Ever since I can remember I’ve always loved cars. I never expected my condition could prevent me from driving. The day the doctor told me I’ll never drive tore me apart. I wanted to give up. That was it for me. But, thankfully, my mum got me back up on my feet. She always told me “It doesn’t matter what people say. You can do whatever you set your mind to. If you want to drive, prove them wrong. Show them you can do it.” I’ll never forget it. I took her advice and, as soon as I could, I got myself a job at a local bus depot which paid for my lessons and a car. I was determined. When my test came around, I failed, but I failed for forgetting to shoulder check. I passed the sight test! When I was ready, I took my test again and passed. I wanted to cry, I was so happy.

All my life they told me “you can’t”, but I did. Getting my licence was the best feeling in the world. I do have down days like the rest of us, but if you push through them you can achieve the impossible. With me, passing my driving test has opened up a huge opportunity to get into my chosen career. I recently started a vehicle panel beaters apprenticeship. My goal is to have my own business, buying and selling cars.

I’m very fortunate to have stumbled on my career and my mother’s wise words have all come true. Against all the odds, I’ve set myself on the path I’ve wanted ever since I can remember. I’ve never seen my condition as a disability, more as a challenge. I have come so far and achieved the unthinkable for someone who has a similar condition.

As much as I’ve got used to my eyesight, I do wonder how it would be to see through someone’s eyes for even a minute. But this is the way I am and I accept it.

If anyone tells you that you can’t, just challenge them, because, once you prove that you can, I guarantee you won’t feel like you have a disability. You’re just like everyone else, no matter who tells you different. Be who you are. Don’t change for anyone and, if a challenge comes your way, fight through it. We are fighters and we’ll do anything we put our minds to.

Please see our free to download booklet, Nystagmus and Driving, for information on the legal and medical requirements.

2018 exams access arrangements feedback

Our friends at VIEW need your help. VIEW is a registered charity, which represents Qualified Teachers of Visually Impaired children and young people (QTVIs). It exists to help support the education, development and opportunities of children with vision impairment.

They would like to receive feedback from schools and services on their experiences, both good and bad, of access arrangements for this summer’s exams. They are primarily interested In GCSE and A level exams, as they are in ongoing dialogue with the exam boards, but they are also happy to receive comments on National Curriculum tests, too. Their aim is to collate the information they receive into a summary report which they will share with colleagues in the sector and with the exam boards.

Please provide as much information as you can in your feedback, including:
• the exam concerned, subject, paper and date
• the access arrangement concerned, e.g modified paper, extra time, human support etc.
• a description of what went wrong/went well
• if you wrote to the exam board concerned about the issue, please attach a copy of your letter/email and any reply you received.

All the information received will be anonymised in the summary report, but your contact details would be useful in case VIEW need to get back to you to clarify any of the information you send.

They will accept information up to the end of the summer term 2018.

Schools can contact VIEW with their feedback, here.

Want to abseil at the Queen Elizabeth Olympic Park?

Could you take the plunge and abseil down from the 262 feet high viewing platform at the ArcelorMittal Orbit at the Queen Elizabeth Olympic Park? It’s an exhilarating descent to the ground, with a breathtaking 20 mile vista across London, including iconic buildings such as the Gherkin, St Paul’s Cathedral, Canary Wharf and Wembley Stadium, as well as the world famous sporting venues at Queen Elizabeth Olympic Park.

It surely is a once in a lifetime challenge!

The Nystagmus Network is partnering with Moorfields Eye Charity to raise money for nystagmus research at Moorfields Eye Hospital, where Mr Vijay Talyor is currently investigating congenital nystagmus and visual crowding, and its research the partner, the University College London (UCL) Institute of Ophthalmology where Dr Parashkev Nachev is pioneering the use of magnetic implants to control the rapid eye movements associated with acquired nystagmus.

Your fundraising abseil will directly support these and other nystagmus research projects.

Time and date: 8am – 1pm, Sunday 23 September 2018
Registration fee: £50
Sponsorship target: £250
Address: ArcelorMittal, Queen Elizabeth Olympic Park, London E15 2NH
Experience: No experience necessary, all training given on the day
Participants will also receive:
· A fundraising pack full of tips and advice
· Ongoing support from our expert fundraisers
· A Moorfields t-shirt if you raise over £350
· A free photo if you raise over £500

If you think you could take the leap for nystagmus research, please complete the form below.

An inspiring meeting with David Katz

The day before Nystagmus Awareness Day 2018, Information and Development Manager, Sue, and trustee, Peter, travelled to London to meet a very inspirational man – internationally acclaimed ‘blind’ photographer, David Katz. Several exciting nystagmus-related projects were discussed – more of those to come.

David will, of course, be the charity’s guest speaker at Open Day in September, bringing us stories of his long and illustrious career in photography, the experience of making his film, Through my Lenses, and, most recently, his assignment of a lifetime to the PyeongChang Winter Paralympics.

Charity trustees meet Marsha

On the Tuesday of ‘wobbly week’ 2018, a group of trustees were invited to Parliament to meet with Marsha De Cordova MP, Shadow Minister for Disabilities. Marsha has nystagmus herself and understands the challenges of accessing the necessary adaptations to make her parliamentary career possible.

Meeting at Portcullis House, trustees, all wearing their Nystagmus Network T-shirts, briefed Marsha on the awareness-raising work of the charity ahead of her keynote speech at Open Day this September.

How amazing is Sara?

A guest post from Sara’s Mum …

This is my daughter Sara. She’s 17 now and born with albinism and nystagmus. Her sight is badly affected, but nothing stops her!!! She is in mainstream school, a huge circle of amazing friends and lives for sports. She has an all Ireland silver medal for camogie (an Irish sport) she plays rugby and Gaelic and is a coach for children in sports. Her next venture is to navigate in a tarmac rally with her daddy next month. She is a very positive and amazing child (in my eyes). Just posting this for all the new parents out there who may be worrying a little xx

How amazing is Amanda

Amanda is a long time supporter of the Nystagmus Network UK and our unofficial US spokesperson. As a professional freelance writer, who also has nystagmus, she is well placed to tell her amazing nystagmus story …

My Nystagmus Journey: Fifth grade diagnosis and beyond

Fifth grade – that’s when my life changed because of my nystagmus; that was the year I got my large print books and was registered as a student with a visual impairment.

Before I tell you about my reflection of that year, we must go back into my history. My mother knew something was not right with my vision from the time I was born. She took me to several eye doctors who basically said the same thing – Nothing is wrong with your child. For now she can read the print that is provided; just make sure she sits up front and rests her eyes when needed.

As I entered the school system and started to struggle with my school work, the doctors and teachers started to change their diagnosis. The first issue they found was that I had cerebral palsy; to fix this difficult issue I had all different kinds of therapy to help improve my muscle function. Then, in second grade, because I struggled with reading, writing and spelling I was found to have a learning disability called Dyslexia. This helped solve part of the problem, except for the fact that I still could not see well.

In fourth grade, the medical doctors started saying that I needed large print books and that my vision was poor. My teachers also started to really notice the problem. So, during the end of the school year, teachers started doing more advanced testing and that testing showed that, indeed, I needed large print.

My mother was so excited that her fight with the school system was successful and that I was going to receive the large print textbooks I needed. I, on the other hand, was not happy about this. I knew that I was different.

The next year came and so did the large print books. They were quite large and heavy. I surprised my teachers by being able to read better despite my Dyslexia. My grades even improved. This improvement did not come without a cost; I was teased by some of my classmates and some of my teachers were slow to understand all this new information. I still did well in my fifth grade year.

A year and a half later we moved from Texas to Florida. The school system for the visual impaired did things differently. They started taking away my large print books and they sent me to a low vision specialist who prescribed low vision aids. I was confused. The reason they did that was to prepare me for the adult world. For the first year I played their game and used my low vision aids, which made them happy. However, it made me unhappy, because I felt so limited on what I was able to see. The years passed and, in my last year of high school, I was almost rejected from the program because I was not using my low vision aids and I kept advocating for my large print when needed. During my last program interview, I told them why I did use my low vision aids. The program staff did what they could to help me until I graduated from high school.

After high school, I went to college with the help of two other programs and I was very successful. Now, with the help of the American Nystagmus Network and the Nystagmus Network UK, I’m sure I will be successful in my freelancing career and personal life.