Weekly digest, 24 September  2021

Social media posts, events and highlights of the past 7 days

On Twitter we took over the Visionary account on Monday to promote Open Day and on Instagram we've been recruiting volunteers to support our Nystagmus Youth account.
Meanwhile, on Facebook ...

A final call for marathon runners
If you'd like to run the virtual London Marathon next month for the Nystagmus Network, please contact us today to book your free place. Cover the distance in 24 hours, any way and anywhere you like. Just for fun.

Monday Focus - Eye Health
This National Eye Health Week it's time to make sure we're all looking after our eyes. That means healthy life style, diet and exercise AND going for a check up at the optician's at least every 2 years (adults) or every year at least (children). If you have nystagmus it's really important to make sure your glasses or contact lenses prescription is as up to date and accurate as it can be. The optician will check the general health of your eyes at the same time.

Tuesday Networking - September get togethers
The Nystagmus Network online forums take place this week, ahead of Saturday's Open Day.
Parents can join in online on Tuesday at 8pm, adults with acquired nystagmus at 5pm on Wednesday and adults with congenital nystagmus at 7pm on Thursday.
If you'd like to join us and haven't received the zoom link, please email us today at

Are you ready to party?
Join members of the nystagmus community for a relaxed and sociable virtual networking evening to round off Open Day 2021.
We kick off at 7pm prompt with a fast and furious team quiz. That's followed by our inspirational speaker, the announcement of the nystagmus champions of 2021 and the draw for the grand prize raffle. Bring food, bring wine and be very to have fun!

Wednesday Awareness - Have you got your programme?
Everyone who's registered to attend virtual Open Day this Saturday will today receive their copy of the digital programme, containing all the links and zoom invitations to the live and recorded sessions.
There's still plenty of time to register so you can join us from 10am on Saturday. Don't leave it too late. You'll want to plan your day.

Nystagmus Youth
Can you help, or know someone who can? We need volunteers aged 18 to 25 to help make our Nystagmus Youth Instagram - for young people with nystagmus by young people with nystagmus. Email us at Thank you!

Thursday Research - Quality of Life Research
If you are registered SI or SSI you may qualify to take part in this 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:
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.

Fight for Sight and Nystagmus Network add to important nystagmus research portfolio

Friday Fundraiser - Rachel
This weekend Rachel and her family will be doing a sponsored walk for the Nystagmus Network around Chester. If you see them, please cheer them on. They'll all be wearing their tropical blue Nystagmus Network T-shirts!

Prize Raffle – win a fabulous prize in the Nystagmus Network Open Day 2021 raffle and help raise some much needed funds for nystagmus research.
All proceeds will go directly to the Nystagmus Network research fund.
Each donation earns entry into the raffle, which will be drawn on Saturday 25 September at the online Nystagmus Network Open Day 2021 networking event.
Buy your raffle tickets on Justgiving.

UK nystagmus research workshop
This afternoon the Nystagmus Network is hosting the 2021 UK nystagmus research workshop. Charity trustees are joined by researchers and clinicians from Cardiff, Leicester, London, Sheffield and Southampton to discuss the way ahead for nystagmus research. Research is underway again and the Cardiff team, in particular, are looking for new recruits to take part in their studies. Find out more and apply on our website.

It's Open Day tomorrow!
Don't miss Mike on nystagmus and employment law, Jay and Helena on telephone appointments, Iona on nystagmus and sleep, Maria on acquired nystagmus, Tim on working on Game of Thrones, movies for the kids and so, so, so much more!
Register free to receive your programme.


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