Blog – Page 2 – Nystagmus Network

Drew is wearing glasses and is smiling for the camera holding a steering wheel. In the background there is a rally car.

Drew’s Story

My name is Drew. Some may know me as DrewpyDesigns. I was born with albinism and nystagmus, but that’s not my full story. I’m a three-time TTT champion, self-employed as a graphic designer, a streamer, a content creator and an ambassador for Speed Of Sight. I have never let my disability stop me, and I urge others to live their lives without letting a disability stop their dreams too.

Throughout my younger years in school, I was always teased and bullied. People would point out my eyes or head wobbling. I always felt left out as I struggled in sports or couldn’t see my friends during break. This was hard at first, but I have since realised it taught me to never be fearful of my disability; otherwise, I’d never achieve anything. Even now, if someone says something about my eyes, I take time to explain to them why my eyes are the way they are and that I have no control over it. Awareness and understanding are vital in stamping out misconceptions and prejudice.

As previously mentioned, I am a three-time champion in Gran Turismo 7 in TinyTurnip’s Twisted Trackdays, a racing championship with some of the best online racers competing against each other. I’m a huge motorsport fan and sadly, due to my visual impairment, I’ll never be able to get a driving licence. When I first started in TTT, I never thought I’d win a race, let alone three championships. But with determination and a lot of practice, I have been able to achieve this.

Another area I have always struggled with is reading, so you’d imagine streaming and reading comments would be a massive issue for me. However, thanks to technology and visual aids such as text-to-speech, streaming has become not only possible but a huge part of my life. In fact, during my streams, the TTS has become an important part of viewer engagement. We’ve named the voice Frankie and I often say I’m now the co-host in my own streams, with Frankie entertaining the viewers with her less-than-perfect pronunciation of certain words.

I’m a strong believer that no matter what someone’s situation is, if you work hard, stay true to your beliefs and embrace any obstacle on your path, you will get to where you desire.

Taylan is wearing a smart suit with a striped tie. He is smiling for the camera and standing outside in an open space.

Taylan’s Story

My name is Taylan. I’m 8 years old and I’m nearly 9.

My mummy was really worried when she found out I had nystagmus.

I have lots of hobbies and things I like to do, such as ecology club, Lego club, painting, playing the piano and nurture club where I play with my friends.

I go to breakfast club and play Uno.

At school, my favourite subjects are art, maths, PE and science.

I am doing the VICTA awards and I volunteered with the MET police and at the library for a day. I had a lot of fun.

I get help from a special teacher who teaches me to cross the road and another teacher comes to help me if I need assistance in lessons, like using a reading slope.

My teacher, Ms Rubie, lets me sit at the front. I like Ms Rubie.

I have nystagmus and I am happy.

Angela is wearing glasses and is smiling for the camera. There is text embedded into the photo that says 'Happy Nystagmus Awareness Day We all have our own story'.

Angela’s Story

I am in my 50s and in my generation, there was little awareness or support for people with nystagmus or their parents.

Growing up, I was always a clumsy child with NHS specs and name calling was involved. I knew I had something called nystagmus but thought it was just a term for poor eyesight.

I had no confidence and often found myself walking into the wrong room or talking to the wrong people. Throughout my awkward teenage years, I relied on memory to navigate, often not knowing where things were, especially computer screens and other locations. However, once shown, I could find my way around. I lacked the confidence to go to college or university, but spent my late teens and early adulthood like most people: I got married, had children and while my friends and family always knew I had poor eyesight, they didn’t realise the full extent of it.

It wasn’t until I had more time on my hands and started to struggle more (partly due to age) that I began to research my conditions: partial albinism, astigmatism and of course, nystagmus. I had a light bulb moment and realised that all the things I struggled with growing up were related to these conditions. I strongly recommend that people learn about their eye conditions. It is now so important that we talk about them, spread awareness and ask for help. It is encouraging that there is support available for younger generations through organisations like Nystagmus Network. Hopefully, they will not have the same lonely and sometimes isolated life that I had due to the lack of awareness and help. Please don’t get me wrong, I don’t wallow in self pity; I love my life—it’s just a bit harder at times.

It’s nearly Nystagmus Awareness Day 2024

Make sure you’re ready to take part in Nystagmus Awareness Day 2024 on 20 June. Your FREE digital programme has all the information and links you need.

There’s the great nystagmus summer get together on Nystagmus Awareness Day itself, a whole load of resources to help you raise lots of awareness of nystagmus, a children’s colouring competition and a whole collection of personal stories from people living with nystagmus. AND … there’s even a bunting template.

Download your Nystagmus Awareness Day 2024 guide here

Calling people living with nystagmus in Scotland who are over 65

Are you an older adult living with visual impairment?

We are a team of researchers at the University of Strathclyde who want to explore your experiences of travelling from home to healthcare premises in Scotland.

What is the purpose of this study?

This study aims to understand the challenges faced and strategies used by older people with visual impairments when navigating to and within healthcare settings. We want to develop recommendations on how healthcare environments should be designed or improved to accommodate the needs of this population among other users.

Who can participate?

You must meet the following criteria to participate:

• Aged 65 and over

• Have a visual impairment (registered or not)

• Speak and understand English

• Live at home

• Able to walk outside of their home (independently or accompanied)

What will you do?

You will participate in one interview session, no longer than 60 minutes.

The interview can take place online, over the phone or in person at the university or somewhere local.

You will be offered a small token of appreciation for your time and any expenses will be reimbursed.

If you are interested in participating or know someone who might be, please contact:

Parastoo Zali

Email: parastoo.zali@strath.ac.uk

Take part in research at Charing Cross Hospital, London

Sarah Hösli, Honorary Senior Research Fellow with the Brain and Vestibular Group at Imperial College London, part of Dr Barry Seemungal’s team, invites study participants.

She writes: “We are currently doing research on understanding the symptom of oscillopsia in people who have nystagmus due to vestibular conditions. To understand the underlying brain mechanisms better, we want to extend this testing to people with congenital nystagmus. The testing involves non-invasive brain stimulation (TMS) and would be done in a single session at Charing Cross Hospital in London. There is no risk associated with the testing.

At a later stage, we might also include patients with acquired nystagmus, especially patients with pendular nystagmus.

More details of the study and application contacts can be found by downloading the below information document.

Call_INS_participants

A child wearing glasses is holding up a poster she has made.

Nystagmus Network trustees publish their annual report for 2023

Through 2023 the charity has gone from strength to strength in delivering support, funding research, and raising awareness. As we enter our Ruby anniversary year trustees would like to thank again all our members, supporters, fundraisers, volunteers and staff for all their efforts ensuring success in 2023 and a great basis for a positive 2024. Thanks to your dedication, in 2023 we

supported 781 people to live well with nystagmus
held the International Nystagmus Symposium 2023
launched a brand new guide to nystagmus and the early years
engaged with and provided information to over 14,000 people on social media
hosted three in person ‘big nystagmus meet ups’ and monthly online get togethers

You can download the annual report here

Nystagmus Network members hold up their voting cards.

Notice of the Nystagmus Network AGM 2023

Notice is hereby given that the Annual General Meeting 2023 (the “Meeting”) of THE NYSTAGMUS NETWORK (the “Charitable Incorporated Organisation or CIO”) will be held online on Thursday 27 June at 7pm.

Members of the Nystagmus Network have received the agenda which includes the Zoom link to join the meeting. Members have also received a copy of the Annual Review 2023, 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 the details.

Thank you.

On behalf of Tim Cuddeford Chair of Trustees, Nystagmus Network

If you would like to join us as a member, attend the AGM and exercise your right to vote as well as other member-only benefits, please visit our membership webpage. Thank you.

Vicky’s 1984 Story

My favourite subjects at secondary school in 1984 were hockey, music and maths.

Fast forward 40 years and those subjects still dominate my life. Professionally I’m Finance Director for an AI Consultancy and Treasurer for the Nystagmus Network. In my spare time I play flute for the local orchestra and spending time with my sports-mad family tends to revolve around various sporting events.

I didn’t know about the Nystagmus Network until at least 10 years later, thanks to Google and a curiosity to find out more about the eye condition I was born with that caused my eyes to wobble. All I knew until that point was that I couldn’t drive, would never be a pilot, had to sit at the front of a classroom to have any chance of seeing the board, and every now and then felt a little foolish for not recognising people in the street.

I was a quiet member of the charity for many years, enjoying the monthly newsletter and occasionally taking part in research. It wasn’t until I became a trustee that I first properly met other people with nystagmus, the wobbly eyes are a bit of giveaway when you know.

Harshal’s 1984 story

The year was 1984 and in a little corner of Middlesex, a baby boy was just starting to explore the world, especially a local park that our family home shared a fence with that had an excellent playground.

My memories, of course, don’t stretch back that far, but I can only imagine the world through the lens of a one-year-old. Perhaps I was busy stacking colorful plastic cups, chasing after a brightly colored ball that rolled just out of reach, or maybe I was mesmerized by the flashing lights of a Fisher-Price or Tomy toy powered by those unwieldy D-cell batteries. Little did I know, the year I began cooing and babbling would also mark the birth of the Nystagmus Network, an organization that would play a vital role in my life years down the line.

Fast forward 40 years, multiple house-moves across multiple continents and I find myself today with my own family, in exactly the same little corner of Middlesex…with exactly the same park from 40 years ago around the corner! However, I’m now not the one sitting in the swings (most of the time), it is my kids who are being pushed by me, on what I like to think/hope are the same swings I sat on all those years ago.

Unlike my involvement with the local park 40 years on, my involvement with Nystagmus Network only marks 1/10th of the charity’s life. It has, however, undoubtedly made a lasting impact on me and my family. What started off as a silent direct debit 4 years ago, transformed into volunteering and then as a fully fledged trustee a year or so after. I would like to think that the charity will still be around in another 40 years and that I will continue to play my part in many of those years ahead. More so, I hope I pass my enthusiasm for nystagmus research, support and awareness raising to the next generation in those years ahead, who may also be in a position to look back over another 40 years, when that time comes around again!

Happy Ruby Anniversary Nystagmus Network!