There’s nothing quite like the feeling of belonging, of knowing that you’re part of a wider virtual nystagmus community and among friends, all working for the same goals as you.
That’s why the Nystagmus Network is a membership organisation.
The more people we represent who are living with nystagmus, or have an interest in the condition, the better able the charity will be to influence real change and to make your voice heard.
Thank you Fiona, Jackie, Jane, Lyndsay, Rachel, Sofie, Sue, Tim and all our other lovely supporters for raising donations for the Nystagmus Network with easyfundraising! If you haven’t signed up yet, it’s easy and completely FREE. 6,200 shops and sites will donate to us when you use easyfundraising to do your everyday online shopping – at no extra cost to you! Every donation you raise makes a difference to us so please sign up and share today.
Take on a 50 km Ultra or a historic 25km – and make it an active Easter! From the Windsor Racecourse base camp 1500 adventurers will head out on looped routes through the Great Park with fantastic views of the Castle, on to Runnymede, along the Thames Path, and take in some wonderful countryside. You’ll get full support all the way, a few post Easter surprises, a celebration finish at base camp and a BBQ meal. It’s a great way to kick off the 2022 Ultra Challenge season and to get in shape for summer. The Nystagmus Network will part fund your place.
Until 28 February 2022 you can get 50% off your registration fee when using code NYCHARITY22 on all CHARITY SPONSORSHIP places.
Thanks to a grant from our friends at the Thomas Pocklington Trust, the Nystagmus Network is delighted to be able to offer parents and carers of children and young people with nystagmus the opportunity to attend one of a brand new series of Parent Power webinars.
Each webinar, led by Karen, from IPSEA (the Independent Provider of Special Education Advice), supported by the charity’s volunteer education advocate, Claire and Sue from the staff team, introduces parents to the special educational needs support available in schools and early years settings and empower you to access it for your child. We’ll even introduce you to EHC plans.
The one day webinars (10am to 2.45pm) are FREE.
Places on the next February workshop are open for booking.
Members of the Nystagmus Network can request advice from our volunteer education advocate, Claire or ask for a referral to our Education Advocacy Service for one to one support with casework.
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.
Read more about Stephen’s run here.
The 2022 Royal Parks Half Marathon, presented by Royal Bank of Canada will take place on Sunday 9 October.
To gain your FREE PLACE for the Royal Parks Half in 2022 you will need to:
If you would like to run for the Nystagmus Network, please complete and submit the form below. Thank you.
FREE interactive CET webinars with the Nystagmus Network for Optometrists and Dispensing Opticians
This December the Nystagmus Network hosted a further series of three interactive training webinars for eye care practitioners.
Investigating and managing nystagmus in the orthoptic clinic was delivered by Gemma Arblaster, Orthoptist at Sheffield Teaching Hospitals NHS Foundation Trust and Lecturer in Orthoptics at the University of Sheffield. Gemma also serves as a research adviser to the Nystagmus Network.
Jayshree Vasani, Dispensing and Contact Lens Optician, ABDO practical examiner and CET Facilitator, presented Solutions for patients with nystagmus, exploring dispensing spectacles and contact lenses for patients with infantile and acquired nystagmus.
Looking at nystagmus from the patient perspective, the charity’s Information and Development Manager, Sue Ricketts, entitled her webinar 1 in 1,000 things you never knew about nystagmus, bringing the patient voice to the fore.
Around 200 practitioners attended each webinar over the course of three evenings. They were very well received with one attendee, speaking for many, saying “Thank you for such an interesting and informative set of lectures. I felt they were a cut above a lot of CET. Well done!”
Sue Ricketts said: “It is the Nystagmus Network’s ambition to bring eye care practitioners and their practices and the nystagmus community closer together, to build stronger relationships, based on knowledge, experience and trust. We are delighted to have the opportunity to provide professional training to help us work towards this goal, thanks to the support the charity enjoys from clinicians and researchers.”
The charity began delivering CET training in May 2020 and is planning more online and in person interactive workshops and courses in 2022.
Division of Optometry and Visual Sciences, School of Health Sciences, City, University of London
People with a visual impairment needed for research into the effect of the pandemic on people living with a visual impairment
We are looking for volunteers, aged 18 or over, who are living with a visual impairment in the UK to take part in a study investigating the effects of the pandemic on those with a visual impairment, their caregivers and those providing low vision services to them; and how lessons learnt can inform future low vision services and support.
As a study participant, you have the option to complete one or two online questionnaires about your experiences and views, one is about how the pandemic affected you and your wellbeing, the other asks about the effect on your Low Vision support services. There are options of an e-mailed Word document or paper version of the questionnaire if required.
If you are not able to answer the questions on line, computer / tablet / smartphone or on paper but would like to take part, please e-mail [email protected] with your phone number and she will contact you to arrange to help you to complete the questionnaires over the phone.
Questionnaires would be expected to take 10 – 15 minutes to complete.
In appreciation of your participation, you would have the opportunity to be entered into a prize draw for a £50.00 Love2Shop Gift Card.
For more information about this study, or to volunteer to take part,
please contact: Liz Frost at [email protected] or –
To take part in the questionnaire about the effects on your wellbeing click on this <link>.
To take part in the questionnaire about the effects on your LV support services click on this <link>.
You are welcome to take part in either or both of the questionnaires.
This study has been reviewed by, and received ethics clearance, through the Optometry Proportionate Review Committee, in the School of Health Sciences, City, University of London (ETH2021-2175).
If you would like to complain about any aspect of the study, please contact the Secretary to the Senate Research Ethics Committee on 020 7040 3040 or via email: [email protected]
City, University of London is the data controller for the personal data collected for this research project. If you have any data protection concerns about this research project, please contact City’s Information Compliance Team at [email protected]
The amazing Mike Larcombe, nystagmus champion extraordinaire is at it again!
You will remember, of course, that in 2019/2020 Mike walked the entire length of New Zealand to raise awareness and funds for nystagmus research.
This New Year sees Mike embark on another ‘out of this world’ challenge.
Never one to let the grass grow under his feet, Mike, the self-styled “wiggly eyed warrior” in reference to his own nystagmus, is embarking on Wiggly Walk 2. The new ‘walk’ is actually a bike ride – around the entire island of Tasmania.
Mike says: “I will be riding a bicycle around Tasmania for Nystagmus Network because together we can help find a cure for nystagmus”.
For 12 days this Christmas, as part of Ecclesiastical’s movement for good , the company will be making £120,000 in donations to charities to help them deliver their vital work. Please nominate the Nystagmus Network for a chance to help us win £1,000! With that amount of money we could supply a lot of hospital clinics with nystagmus information leaflets for their patients.
In answer to the question ‘What does a visually impaired child see?’ the Thomas Pocklington Trust has produced a new video simulating the 5 most commonly seen forms of vision impairment in children and young people, including nystagmus. The film, What do we see? 2, shows what it’s like to have nystagmus, retinitis pigmentosa, infantile or juvenile cataracts, retinopathy of prematurity and optic atrophy. Footage was recorded in a school setting.
Members of the Nystagmus Network forum for adults living with congenital nystagmus viewed the first draft of the nystagmus simulation and helped shape the final version. We are very grateful for their feedback.
TPT said: “Thank you so much for all your support and guidance throughout the making of this. We couldn’t have done it without you.”
