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Weekly digest, 21 May 2021

Social media posts, events and highlights of the past 7 days
Special edition charity candle
We featured the special edition charity candle, created for us by Oli at No.14 The Wick, in celebration of Nystagmus Awareness Day 2021. The fragrance is bergamot and sage, described by Oli as "uplifting and positive" which reminds her of how the charity made her feel when she looked for support during some challenging times.
 
Thank you Tim
We said thank you to Tim Pearce, author of Secret Agent Striker who joined us on Monday 10 May in our second children's online writing workshop. Tim answered all of our young writers' questions before giving the children the opportunity to write their own story, collaboratively, with everyone chipping in ideas for character names, appearance and even the design of their slippers! Tim promises that the nystagmus children’s story will appear as part of his next book.

Meet the Author
We featured children's author and illustrator, Claire Alexander and reminded our followers that the third and final online children's workshop takes place on Thursday 17 June. Claire is the author of A Little Bit Different, which describes a journey from ignorance to acceptance. Her new book, A Little Bit Of Courage is coming soon.

Monday Focus
Our weekly Monday Focus featured the Nystagmus Network free guide to registration for adults with CN and AN which highlights the discretionary provisions open to Consultant Ophthalmologists who can take into account the impact on everyday life when making decisions on registration as sight impaired.    

Nystagmus Awareness Week Forums
We published our schedule of monthly forums for June, with all of the forums taking place during the week leading up to  Nystagmus Awareness Day 2021 on 20 June.

Acquired Nystagmus Forum
The Acquired Nystagmus Forum was held by Zoom on Thursday  evening. Topics under discussion included the wider effects of AN on thought processing, prism lenses in glasses, contact lenses, exercises and activities to alleviate the worst of the symptoms, how the time of day can affect wellbeing and the sight and whether cucumber might be a 'miracle cure'!


VICTA grants
We featured grants available from VICTA for blind and partially sighted children and young adults for the purchase of equipment to aid visual impairment.

IPSEA courses
We featured upcoming courses by The Independent Provider of Special Education and Advice (IPSEA), SEND tribunal hints and tips, designed to help those refused assessment and EHC plans to deal with the appeals process.

Raindrops Photography Competition
We shared some early entries and reminded our supporters and followers that our Raindrops Photography Competition is underway and that all of the photos will feature in a virtual online gallery on Nystagmus Awareness Day, 20 June 2021.

Amazing Achievements
We invited our friends and followers to send us details about their amazing achievements despite, or maybe because of nystagmus. Always a popular feature, the amazing nystagmus stories, along with photographs, will be featured on our social media in the run up to Nystagmus Awareness Day.

  
Friday Fundraiser
We shared the link to Mark's Justgiving page. Mark, also known as 'the running accountant', will be running the Race to the King next month to raise money for the Nystagmus Network in the name of his son, who has nystagmus.

Don't forget your T shirt
There's plenty of time to order your Nystagmus Network T shirt for Nystagmus Awareness Day. Adult and child sizes available from our online shop.


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