Weekly digest 1 October  2021

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

On Twitter we continued to promote the pre-recorded Open Day presentations, celebrate our fundraisers and advertise our vacancy. Meanwhile, on Facebook ...
Open Day
Grab your digital programme and zoom in for the live sessions.
First up at 10.30am Helen, Gemma, Ifigeneia and Nikita answer your questions about nystagmus research and treatments.
At the same time, the family movie will be live streaming to entertain the children.
We have a busy day ahead so we hope you've got it all planned.
See you at the 'end of Open Day' party later!

Missed Open Day?
We had some fantastic live sessions yesterday. Thank you to everyone who took part, speakers and delegates. We look forward to seeing you all again in person next year.
The pre-recorded presentations are still available to view any time and as many times as you like.

Monday Focus - the nystagmus community
Nystagmus is not a rare condition, but sometimes it can feel like you're the only one. That's why it's so important to find your nystagmus community, here on Facebook, or among your own local community. There's nothing like talking with someone who understands. How have you found your nystagmus friends?

Tuesday Networking - Thank you, Rob!
Thank you to everyone who joined us for the end of Open Day quiz on Saturday night and, especially to Rob from Interrupt the Routine for hosting.

Wednesday Awareness - those awkward conversations 
How do you talk about nystagmus with people you've only just met? It can be hard to find the right words, can't it? How do you explain something that's so hard to understand?

Blind and partially sighted voters
Urgent update from RNIB: Elections Bill could weaken protections for blind and partially sighted voters.
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. You can find everything you need to know on the Elections Bill on the RNIB website. You could 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.

Help in Exams
There is a range of possible arrangements for school pupils with visual impairments. These can include things like extra time, adapted or modified materials, using a laptop or having a reader or scribe. Find out more on the IPSEA website.

Thursday Research - Nystagmus Research
Want to catch up on all the latest nystagmus research news and hear from hospital clinicians, too? You can.
Even if you missed the live sessions of Open Day 2021 at the weekend, you can still watch the the pre-recorded presentations for a limited time by emailing us at to request your digital programme.

The impact of Covid 19 on sight
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.

Friday Fundraiser - James
Huge thanks to James for organising an amazing event at his golf club in support of the Nystagmus Network and to everyone who contributed. You've raised £4,485 so far!


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