Tag: nystagmus network

a blurred street scene

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

The Nystagmus Network logo and the words 'parent power'

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 Nystagfmus Network logo and the words 'nystagmus champions 2021'

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.
 

a number of raised hands

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.

A woman undergoing a sight test.

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

A technology demonstration.

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.

Front cover of the Nystagmus Network virutal Open Day 2021 digital programme.

Open Day digital programme – out now

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.

Register for Open Day here

Jon Erichsen speaks with delegates at a Nystagmus Network Open Day.

Take part in research at Cardiff University

Professor Jon Erichsen and his team from the School of Optometry and Vision Sciences, Cardiff University, Nikita Thomas, Katherine Ward and Onyeka Amiebenomo invite you to take part in nystagmus research.

Following their demonstrations at virtual Open Day 2021 of various nystagmus and eye tracking studies currently being carried out, you are warmly invited to apply to take part.

If you’re interested, please complete the form below. We will pass your details on to the Cardiff University team, who will be in touch with you.

A postcard featuring some of the highlights of the Nystagmus Network virtual Open Day 2021 on Saturday 25 September.

Register now for Open Day 2021

Nystagmus Network Open Day – Saturday 25 September

 We promise a packed programme of presentations, inspirational speakers, research updates, videos, workshops, forums, competitions and so much more – all available wherever you are. Plus, you’re warmly invited to join a fabulous live and interactive networking event. The theme for this year is ‘How amazing are you?‘. We’ll be celebrating all of your successes! Following the success of ‘virtual’ Open Day 2020, we’ll be doing it all again, but this time even bigger and better and, of course, it’s all free of charge.

Register here to attend

Once registered, you will receive a digital programme containing links to all the presentations and live events.