nystagmus – Page 13 – Nystagmus Network

Delegates at an interactive CET workshop

Training eye care practitioners

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.

Take part in research

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]

A graphic of Mike dressed as the wiggly eyed warrior.

Wiggly Walk 2

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.

New to Mike’s story? Catch up on the all the highlights here

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”.

Find out more about Wiggly Walk 2 here

12 days of giving £120,000, 120 charities £1,000

Please nominate us to win a £1,000 donation

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.

Please nominate the Nystagmus Network here. Thank you.

What do we see?

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.”

Watch the video on YouTube here

Parent Power is back!

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 will introduce 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.

Each session will be led by Karen, a qualified and experienced trainer from IPSEA (the Independent Provider of Special Education Advice), supported by the charity’s volunteer education advocate, Claire and Sue from the staff team.

The one day webinars (10am to 2.45pm) are FREE and will be held online from November, 2021 through to March 2022, so there’s bound to be one that suits your schedule.

Places on the next two workshops are already open for booking.

Book your place for Parent Power on Friday 14 January here

Book your place for Parent Power on Friday 11 February here

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 Nystagmus Champions of 2021

Nystagmus Network Vice-chair, Peter Greenwood, was delighted to announce the ‘nystagmus champions’ of 2021 at the end of Open Day party on 25 September.

Tyler Urquhart
The Urquhart family are, quite literally, tireless supporters of the Nystagmus Network.
This year they walked ran or swam 200km over 30 days. Everyone took part, even the dog!
We like to encourage children and young people to own their nystagmus and help us raise awareness on Nystagmus Awareness Day.
11-year-old Tyler always goes one better than that. In previous years he’s organised a sponsored school walk and a quiz and even approached local businesses for prizes for the winning and losing teams.
This year he was hard at it once again, manning a stall in his Nystagmus Network T-shirt, helping his family smash their £250 fundraising target. We hear he did a lot of the running, walking and swimming, too! Well done, Tyler.

Sarah Mills
There aren’t many people in Derbyshire who haven’t heard of nystagmus. That’s all down to one woman, Sarah Mills.
Sarah has been running for the Nystagmus Network for a number of years and achieving some really great press coverage along the way.
This July she excelled herself, completing the Peak District Ultra Challenge – 100km in 24 hours.
Not only that, but she persuaded scores of local businesses to donate raffle prizes, too.
Sarah has raised over £2,000 this year, for the nystagmus community and for her beautiful daughter, Delilah.

James Singleton
We first heard from James when he contacted the charity in December 2020 to let us know he’d signed up for the 19-21 challenge. James’s challenge was to run 300km in January 2021. He was doing it for his son, his ‘little champ’.
This being James, he got a whole lot of mates involved. There weren’t many people in Jersey who hadn’t seen a bright blue T-shirt go flashing past by the end of the month.
Together they raised over £1500.
In June 2021 James was at it again, running the Canaccord Half Marathon in Jersey, with his sister, Laura. Together they raised another £680.
In September James held a Nystagmus Network charity day at his golf club. James and his fellow golfers raised over £5,000 and a very good time was had by all.

Thank you to all three of our Nystagmus Champions of 2021 and to all our wonderful supporters.

Elections Bill could weaken protections for blind and partially sighted voters

Urgent update from RNIB:
The Government has put forward a draft law – the Elections Bill – which weakens protection for an independent vote for blind and partially sighted people. But there is still time to stop this from happening.

RNIB need to persuade the Government to maintain the existing law, and need your help to do it. Will you meet your MP to help maintain an independent vote for blind and partially sighted people? You can use RNIB’s simple online form to email your MP to request a meeting. Get in touch and RNIB will send you all the information you need to make your meeting a success! You can also join virtual chats with them to get tips on how to prepare. Or you can find everything you need to know on the Elections Bill on the RNIB website. You could also email your MP today using the pre-written email to MP which is available on the RNIB website.

RNIB’s latest research showed that only 1 in 5 blind voters and less than half of partially sighted voters were able to vote independently and in secret in the 2021 elections – this could get worse if the current wording is not maintained in the new Bill.

The State of the UK’s Eye Health

A NEW report paints a stark picture of the impact the Covid-19 pandemic has had on eye health in Britain – with experts warning of a ‘ticking timebomb’ and significant fallout for years to come. The State of the UK’s Eye Health 2021 report, commissioned by Specsavers in collaboration with leading eye health experts and charities, counts not only the additional financial burden now facing society but, more worryingly, the real cost to people’s sight.

With more than 4.3 million fewer eye examinations provided (a 23% drop) and more than 235,000 necessary eye hospital appointments missed or delayed throughout the pandemic, eye health experts are predicting a surge of referrals to ophthalmology services, which are already stretched. Early detection and management of eye conditions is vital so any delay could be detrimental.

Read The State of the UK’s Eye Health 2021 report on the Visionary website

Quality of Life Research

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:

https://survey.researchopinions.co.uk/index.php/482932?lang=en

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.