Weekly digest, 18 June 2021

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

The Welly Walk for Raindrops 
The Welly Walk takes place on 19 and 20 June, to mark Nystagmus Awareness Day 2021. You can fundraise or donate here

Congratulations Sam
Sam Jones completed the gruelling North Coast 500 miles cycle ride in just 8 days to raise funds for the Nystagmus Network. You can read about his amazing achievement in Notes from the Saddle 

Albinism Awareness Day
We marked  International Albinism Awareness Day on 13 June 2021.

Ecclesiastical Movement For Good Awards
500 charities stand to win £1,000 each from the Ecclesiastical Movement for Good awards scheme. This could pay for nystagmus information leaflets in hospitals across the UK. We invited our followers to nominate us so that we can share in the scheme. Nomination are now closed.

Monday Focus - Nystagmus and Sleep
As part of our Nystagmus Awareness Day programme, we featured a zoom seminar session with Dr Iona Alexander from Circadian Therapeutics, a researcher in the measurement of human sleep and circadian rhythms. The seminar was well attended and Dr Alexander provided a fascinating overview of the importance of sleep and the difficulties sight loss can play in sleep rhythm disturbance. We were assured that further research in relation to the effects of nystagmus eye movements on sleep was going to take place and that further research participants from the nystagmus community were very much welcomed.

Nystagmus and Employment law  
Mike Cain is an Associate Solicitor in the Employment Law Team at Leigh Day Solicitors. Mike joined Sue in a zoom interview to discuss employment law in relation to nystagmus. The interview is featured in our Nystagmus Awareness Day programme which also includes the link to view.

Nystagmus - our perspective
We featured a brand new video from our friends at the German Nystagmus Netzwerk, which highlighted the accounts of four nystagmus sufferers and their experience of living with Congenital and Acquired Nystagmus. The film has English subtitles. It features in our Nystagmus Awareness Day programme which also includes the link to view.

Parents' Forum
The Parents' Forum was held by Zoom on Tuesday evening. Topics under discussion included nystagmus and sleep, coloured writing paper, the importance of involving a QTVI at an early stage, Nystagmus Awareness Day, SEND support and Notes from the Saddle.

Acquired Nystagmus and Oscillopsia Forum
The AN Forum was held by Zoom on Wednesday evening. Topics under discussion included the differing NHS treatment and care arrangements across the UK and how important a second opinion may be to individual care plans, difficulties mobilising, the effects of a stroke, nystagmus and sleep and Notes from the Saddle.

Congenital Nystagmus Forum
The CN Forum was held by Zoom on Thursday evening completing all three forums in the week leading up to Nystagmus Awareness Day. Topics under discussion included VI driving experiences, canal holidays, sports and other activities available, the effects of long Covid and tips reading columns of figures.

Meet The Author
We welcomed Claire Alexander, author of 'A Little Bit Different' and 'A Little Bit of Courage'  to lead our third and final Meet the Author event ahead of Nystagmus Awareness Day. Claire read extracts from some of her stories and held a drawing masterclass. It was totally magical to meet the Ploofers!   

Our Visionary Twitter takeover
The Nystagmus Network took over the Visionary Twitter account for the day to promote the Nystagmus Network services and charity story as well as the Raindrops campaign for Nystagmus Awareness Day 2021.

How Amazing are you?
We featured Tim, one of our 'how amazing are you?' stories in celebration of Nystagmus Awareness Day. Tim has a whole clutch of awards for his work. He says: "I ain’t done bad for a lad that can’t see too well." You can read all the nystagmus success stories on our website here.

How amazing are Grayson and Poppy?

Grayson recently started school and found it all a little scary at first. But he soon made lots of friends. Grayson’s Mum says: "I could burst with pride at the obstacles he faces but is never held back."
Read Grayson's story here.


Poppy is an accomplished dancer and horse rider, but she admits she’s a little daunted about starting secondary school in September.

Poppy says: I just want to let others know you can do anything and be anything you want. You are unstoppable.

Read Poppy’s amazing nystagmus story here

Friday Fundraiser
We featured all the people taking part in the Welly Walk for Raindrops on Saturday and Sunday.

Raindrops on the Radio
Listen to Sue chatting with Fiona Sandford, CEO of Visionary and Allan Russell from RNIB Connect radio about Nystagmus Awareness Day 2021 and Raindrops here.

Happy Nystagmus Awareness Day everyone!

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