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Weekly digest, 14 May 2021

Social media posts, events and highlights of the past 7 days
Raindrops Mascots
We featured our Raindrops Mascots, which have been expertly crafted by our knitting volunteers in support of Raindrops and Nystagmus Awareness Day 2021. A must have for those taking part in the sponsored 
Welly Walk on 19 or 20 June 2021.

Focus
We published our regular monthly edition of our digital newsletter, Focus  entitled 'Here comes summer' with news of the Nystagmus Network Captain Tom 100 challenge, Raindrops and the Welly Walk.

Meet the Author -  Tim Pearce
Tim Pearce, author of Secret Agent Striker joined us on Monday afternoon 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.


Monday Focus
We invited the nystagmus community to share with us one fact about nystagmus that they wished they had known at the very beginning of their nystagmus journey.  
 
Parents Nystagmus Forum
The Parents' Forum was held by Zoom on Tuesday evening. Topics under discussion included the importance of involving a QTVI at an early stage, SEND support and the local offer information and support directory now available in every area.

Research Grant Funding
We announced that in association with Fight for Sight, the Nystagmus Network is offering grant funding up to £15,000 to support clinical research associated with any aspect of nystagmus. Applications are now invited with a closing date on 5 August.


Virtual Support Networks.
Our virtual support groups for parents or adults living with acquired or congenital nystagmus get together once a month on Zoom. The meetings are helping people stay connected and we invited all of the nystagmus community to join us.

Every Mind Matters
This mental health week we encouraged all of our followers to look after one another and themselves and featured some advice and tips from the NHS

Raindrops Story writing tips
We introduced Raindrops judges, Nadine Neckles and fellow author, Rachel Beckles who offer story writing tips and advice in their video intended to encourage all of our young writers to join in with our Raindrops story writing competition 


Friday Fundraiser - Laura
Laura and her brother James will be running the Canaccord Jersey Half Marathon next month for the Nystagmus Network. Laura says "James and I are not exactly brilliant runners! We won’t pretend the training is going well but, to be honest, we will be delighted if we just finish!" You can sponsor Laura here

ENDS
 




 
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