In November 2020, the Nystagmus Network shared news of a new research survey into people’s perceptions of nystagmus. The results have now been published.
The responses to the survey show that people with nystagmus tended to predict that the public would not think that the condition affects their daily lifestyle as much as it actually does.
It seems that members of the public had a greater understanding of challenges faced by individuals with nystagmus if they had met someone with nystagmus or if they had even heard of the condition.
This suggests that greater public awareness of the condition could be achieved through increased exposure of the condition through media and other online methods of promotion.
What this tells us, is that raising awareness of nystagmus is beneficial for everyone.
Future work It is thought that further qualitative questionnaire studies regarding nystagmus could be carried out to identify specific issues that individuals with nystagmus have faced during lockdown and whether these are common to other disorders of vision.
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.
The Nystagmus Network has been investing in research since the 1990s.
Nystagmus academics, clinicians and researchers in Cardiff, Leicester, London, Plymouth, Sheffield and Southampton continue to focus on causes, effects, treatments and quality of life.
In the last 30 years we’ve seen huge advances in the sophistication of diagnostic techniques, with more widespread use of electronic testing providing ever more accurate clues to the causes and likely impact of nystagmus.
Optical, medical and surgical treatments have also been developed to improve both the vision and the quality of life.
There has been much to celebrate.
But, despite some emerging signs of potential early interventions, sadly, prevention and cure still seem a long way off.
We need more research!
To kickstart more nystagmus research, we need two things: money and a good research question.
You can help us!
Tell us which aspect of life with nystagmus you think researchers should examine as a priority to achieve the greatest impact on people living with the condition by submitting your research question today. We will collate all your responses and put them to researchers in a bid to start some new nystagmus research.
Your research question should be:
Focused on a single aspect of life with nystagmus
Researchable using primary and/or secondary sources
Feasible to answer within a reasonable timeframe
Specific enough to answer thoroughly
Complex enough to attract academic interest
Relevant to the lives of people living with nystagmus
Please use the form below to submit your nystagmus research question.
The deadline for submissions is 31 March
Alternatively, you can make a donation to the Nystagmus Network research fund to help us continue to push the boundaries of scientific investigation.
The Royal Parks Half Marathon is a spectacular run through central London – the first and only one of its kind. The stunning 13.1 mile route takes in the capital’s world-famous landmarks on closed roads, and four of London’s eight Royal Parks – Hyde Park, The Green Park, St James’s Park and Kensington Gardens.
Stephen ran the Royal Parks for the Nystagmus Network in 2021, raising £370.
Acumen are currently organising research in the UK on behalf of a national sight loss charity to test a quality of life measure that is currently being developed. For the survey they are looking to blind and partially sighted people.
The quality of life measure will help the charity assess the ongoing wellbeing of people in relation to the services they use. All responses will help to refine the questions as necessary.
The research involves a 15 minute online survey and anybody contributing will receive £10 as a thank you for their time.
People interested in the study should follow the link below to complete the screening questions to register interest:
Acumen will then send the full survey details should people meet the criteria for the study. In this email everybody will receive a unique ID number so that they can record the response and provide the incentive upon completion.
The main criteria for people to be eligible for the study is that they are registered partially or severely sight impaired.
The Nystagmus Network has checked with Acumen that this research is backed by a bona fide institution, that there are no commercial interests and that data with be correctly stored and privacy protected.
All registered Open Day 2021 delegates are now receiving their copies of the digital event programme. This contains all the links to the pre-recorded presentations and the Zoom invitations to the live workshops, Q+A panels, quiz and networking event.
There’s still plenty of time for you to register and take part from 10am on Saturday 25 September.
Kathryn joins us for Open Day 2021 to let the nystagmus community know all about Goalball. Meanwhile, you can find out more about Kathryn and her sport in this guest blog post.
My name is Kathryn Fielding and I work for Goalball UK. What’s goalball you ask? You’re not the first person, but hopefully before too long you will be the last. My dream is that people’s response will soon just simply be – “oh, goalball, (insert positive comment)”!
So where did my goalball journey begin? The answer is a long way from home, almost 21 years ago. Having recently graduated from university with a degree in Sports Science, I was taking a gap year, travelling the world – some may say ‘avoiding work’ but I prefer to say ‘preparing for work’ – gaining life experience before embarking on a then as unknown career.
Anyway, I purposely arrived in Australia in early September 2000, just in time for the start of the Sydney Olympics. Following which of course came the Paralympics. For me, sport is sport. I’ve always loved playing and watching anything and everything, so my travels were paused for what I thought at the time was a once in a lifetime experience.
On October 21st I went along to watch GB Women play Australia in the wheelchair basketball. Unfortunately, GB lost heavily, but me and my newfound friends that I had made in the hostel that had become my home for the past few weeks still had a blast – proudly waving our Union Jack flags and dancing along to the likes of the YMCA on the big screen! The Cha-Cha slide and Gangnam Style were yet to be released!
That day could have been very different though. Having looked at the schedule, we narrowed our itinerary down to Option A or Option B. Option B being to go support the GB goalball teams – but as we didn’t know what goalball was, we went with Option A and the wheelchair basketball instead.
If we had gone with Option B, I would have indirectly met people (players, coaches and officials) that have since become close friends.
Fast forward 3 calendar years, and after teaching for 2 academic years (back home at Leeds City College) I decided it wasn’t really the career for me. I saw a development role, working specifically with Visually Impaired people, advertised at Disability Sport Yorkshire. If you don’t shoot, you don’t score and all that so despite my relative inexperience in the field, I decided to apply and, much to my surprise, was offered the job.
So, it was October 2003 when my goalball journey really began. The role naturally involved goalball development in Yorkshire as well as supporting British Blind Sport who back then governed goalball nationally. Having quickly learnt the basics, I was soon here, there and everywhere, coaching, officiating and generally helping to raise awareness – as I still am to this day.
My first international trip was to Sweden in November 2004, coaching Leeds (now known as West Yorkshire Goalball Club) at the Gothenburg Marathon tournament. It’s fair to say I was a little bit out of my depth, sitting on the bench doing my best to offer useful insight to the players whilst desperately trying to remain awake. This was not because of a lack of interest in the sport, just that the tournament started at 7pm on the Friday evening and continued throughout the night and subsequent day and night until 1pm on the Sunday afternoon! Hence why it was called a Marathon tournament. Something that we have since successfully replicated in the UK.
In January 2005 I was appointed as the Assistant Coach to the GB Women’s squad and before too long was heading off to my first European Championships (in Belgium). Many more trips have followed (either as a coach or an official) to various destinations around the world. All the while I have been busy working to help grow the sport as an employee (of RNIB and now Goalball UK) and an enthusiastic volunteer.
The London Paralympics in 2012 was an obvious highlight. I have also been fortunate to be involved in a home World Championships (Sheffield in 2010) and a home European Championships (Worcester in 2013) and I hope to be involved in a home World Games (Birmingham in 2023) when goalball will be one of 11 sports for athletes with visual impairments being showcased.
Having said all that, I get just as much satisfaction, if not more, from being involved with small, local events – be it taster sessions for schools or community groups; club training sessions; or Regional Novice tournaments.
The Goalball UK tagline is ‘Transforming People’s Lives’. This is definitely not just a gimmicky slogan. It is true and we have lots of our stories to provide the evidence.
So, if you are still reading, thank you for persevering with my rambles! You will be pleased to hear that we have now reached the crux of the post, the call to action, your invite to become a player, coach or official so that goalball can transform your life too.
The Goalball UK 21/22 season is about to begin with clubs returning to training and competitions scheduled to take place (around England). So come and be part of the amazing #GoalballFamily:
Guide Dogs this week launch a new service, Tech for All, to help children with a vision impairment access their own devices at home – to support learning, or simply to have fun and explore the interests and activities they enjoy.
Tech for All will provide iPads to visually impaired children aged 3-18 across the UK, whilst secondary school-aged children (11-18) may choose an iPhone instead. The devices have excellent accessibility features built-in and online guides and tutorials will be provided to help them get started and to ensure that they know how to stay safe online.
The devices will be completely free of charge, with the only requirement being proof of vision impairment.
More information can be found at www.guidedogs.org.uk/techforall and applications are scheduled to open on Thursday 22 July. Stocks are limited so apply early to avoid missing out!
Zoom celebration for International Albinism Awareness Day on 13 June 2021
Guest post from Roselle Potts, Chair of the Albinism Fellowship
To mark International Albinism Awareness Day* on 13 June the Albinism Fellowship is running a mini conference on Zoom.
The event will kick off at 2pm and after a brief introduction session there will be 3 choices of session to join in with:
1. A session for parents whose children have been newly diagnosed with Albinism.
2. A ‘cook along’ session for children and teens.
3. A discussion session for adults with Albinism.
Roselle Potts, Chair of the Albinism Fellowship, said: “ During the past difficult year of Covid-19 and lockdowns we have used technology to enable people with Albinism and their families to continue to connect, share and celebrate. We hope that lots of our community will join in on 13 June”
For more information about the Albinism Fellowship Baby Box Scheme, or for interview and photo requests, please contact Roselle Potts at the Albinism Fellowship email: [email protected]
For more information about the Albinism Fellowship, which provides help and support to children, their parents and adults with albinism in the UK and Republic of Ireland, please visit: https://www.albinism.org.uk/about-the-fellowship/
About International Albinism Awareness Day*. International Albinism Awareness Day is marked every year on 13 June to celebrate the human rights of people with Albinism around the world. It is marked with specific events in various countries, social media activity and campaigns. The United Nations’ General Assembly proclaimed 13 June as this specific day with a resolution it adopted in 2014.
Ian Springett joined the Nystagmus Network staff team in January 2021.
Following a career in public service, most recently as an ECLO (Eye Care Liaison Officer) and Complaints Officer with the NHS and before that serving as a Police Officer for 30 years, Ian has settled quickly into his new role with the charity as an Information Support Officer.
Ian’s first 3 months with the charity are funded by a grant from Pears Foundation and is part of Government’s £750m charities package, granted through Pears Foundation’s trusted, long-term Partners to ensure funding gets to frontline organisations and their communities.
The Nystagmus Network is grateful to Pears Foundation for their philanthropic support.
