We are delighted to offer people who have nystagmus the opportunity to take part in an exciting new research study at the University of Plymouth, in collaboration with Cardiff University and jointly funded by the Nystagmus Network and Fight for Sight.
Who are we looking for?
Anyone aged between 18 and 35, diagnosed with Infantile (Congenital) Nystagmus
What will you be doing?
Complete vision tests on computer at the University of Plymouth to assess how well you can see static and moving letters and static dots
Complete vision training at home for 1 hour per day, 3 days a week over a period of 4 weeks
Are you aged between 16 and 25? Have you accessed UK-based eye clinic and low vision services as a child or young adult? If so, a team at the University of Sheffield would like to invite you to take part in a research project. They want to understand the impact of paediatric low vision clinical services from the patient’s point of view. You can talk about your experiences in a Google Meet interview. The research team is based at the Division of Ophthalmology and Orthoptics, University of Sheffield.
We are sorry to share the sad news that Richard Wilson, Chairman of the Nystagmus Network from 2011 to 2019, passed away over the Easter weekend.
Richard’s contribution to the work of the charity and the nystagmus cause is immeasurable.
His most notable achievements include our first ever clinical training day, the introduction of an annual UK nystagmus research workshop and, of course, Nystagmus Awareness Day, which we first celebrated nationally and internationally back in 2013.
Of that day Richard himself said:
“What a momentous day this has been. I am hugely proud to hold the chairmanship of the Nystagmus Network at this time. We have done something very special today. Brilliant people doing truly brilliant things. Perhaps we should do it again? But for now, let us just reflect on this success and sleep well knowing we have changed perceptions and some attitudes.”
Just a few days ago Richard urged charity trustees and staff to “Keep doing all the great stuff for the Nystagmus Network! And keep smiling.”
Thank you for everything, Richard, and we promise we will! – from all of us at the Nystagmus Network
We need a volunteer to support our use of Donorfy to manage our membership, grant funding applications, income generated from fundraising and donations and interactions with supporters, volunteers and beneficiaries.
Donorfy is implemented. We need it to work for our small staff team.
2 part time members of staff (support officer and fundraiser) will work with the volunteer
Depending on the skills and interests of our volunteer, there is lots of scope for further development of the role
What are we looking for?
Experience and expertise in implementation of a CRM (preferably Donorfy) within a not for profit organisation.
What difference will you make?
Your expertise can help us develop this small charity with huge ambitions to move on to the next level and really have an impact on the nystagmus community.
If you have relevant skills and experience, we would love to hear from you.
You can apply for our voluntary opportunity below.
All volunteer appointments are subject to a DBS check.
After a three-year wait following the pandemic, an enormous amount of planning and anticipation, it is with huge disappointment that trustees and staff have decided to cancel this year’s in person Open Day in Sheffield because of the national rail strike called on 1 October.
The event will now go ahead online
We have not reached this decision lightly as we know how many people were looking forward to the day and being back together in person. We considered a number of options, postponing till next year, rescheduling for later this year, going ahead with far fewer delegates than usual and with some key people and speakers missing, holding a hybrid version of the day or making it a fully virtual event.
All our speakers will still be with us online
After weighing up the relative merits and cost to the charity of each and taking into account the preferences of our members, we have opted for a full day virtual programme with live speakers, workshops, panels and Q+A sessions.
All those already booked to come to Sheffield and all our members will automatically receive an invitation to the virtual event and a copy of the full programme.
We are so looking forward to spending some quality time with you on 1 October, albeit online, and promise to make Open Day 2022 the best possible virtual experience for all.
Nystagmus Network trustees donated £17,000 to the paediatric fund of the University of Southampton’s Gift of Sight appeal last December thanks to the generosity of our fundraisers and supporters.
Someone who contributed more than most is Southampton-born Mike Larcombe who, in 2020 completed his Walk for Wiggly Eyes, a three and a half month long adventure following the Te Araroa pathway and then, in 2021, cycled all around Tasmania for his Wiggly Walk 2.
In total to date Mike has raised a phenomenal £6,500 for nystagmus research.
THANK YOU, MIKE!
The £17,000 is being used to fund a hand-held RETeval device, an imaging tool which will help diagnose changes that may impact a patient’s vision, and four Cervical Range-of-Motion instruments (CROM) to measure head postures.
The new equipment will be used in both the clinics and the research labs at University Hospital Southampton.
Consultant Ophthalmologist, Jay Self said: “This funding will have immediate impact on children with nystagmus in addition to providing a small equipment contribution to allow our larger clinical trial to be funded and approved by NIHR.”
This August the Nystagmus Network was finally able to meet with and celebrate the incredible achievements of a true nystagmus superhero, Mike Larcombe.
From December 2019 and for a total of three and a half months, Mike walked the entire length of New Zealand (yes! the North and the South Island!) following the Te Araroa pathway to raise funds for nystagmus research and awareness of the condition.
Along the way he endured very wet feet, a constantly rumbling tummy and often only the company of chickens!
As if that were not enough, in 2021 he was at it again, cycling (and singing!) all the way around Tasmania.
In total Mike has raised a whopping £6,500 for nystagmus research!
His feet were nice and dry this week as he chatted with Jay Self and Helena Lee, researchers and clinicians at University Hospital in Mike’s home town of Southampton along with Harshal Kubavat and Sue Ricketts from the Nystagmus Network. During their visit the group toured the clinics and research labs to find out where some of that hard earned fundraising money goes.
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.
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.