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Weekly digest, 04 June 2021

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

Nystagmus Awareness Day 2021
We reminded all our followers that the Nystagmus Network online shop has everything they need including candles, T-shirts mascots and much more for Nystagmus Awareness Day 2021.

Nystagmus Heroes
We invited members of the nystagmus community to take a few minutes to share their amazing nystagmus success stories with us All of the accounts will be featured on our Facebook page in the run up to Nystagmus Awareness Day in celebration of their achievements. 

Annual Report 2020

We announced that the trustees have lodged the 2020 Annual Review with the charity commission. We reminded everyone that 2020 had been a very challenging year and thanked our supporters for their generosity and resourcefulness.

Membership 
Our followers were reminded that the Nystagmus Network is a membership organisation in addition to a registered charity and we invited potential new members to join us.

Facebook Cover Photo
We updated our cover photograph on Facebook to highlight and promote Nystagmus Awareness Day 2021. We included some inspiring photographs that have featured in our Raindrops campaign so far.

Blind Downhill Mountain Biker
20 year old Xavier Hopkins from Reading is a blind downhill mountain biker (he has nystagmus and albinism) and is about to turn professional!  We featured his success story and shared the BBC news article to reassure parents who may be worried that their child with nystagmus may not be able to ride a bicycle.

Raindrops Story Writing Competition
Claire Alexander is one of our Raindrops Children's Story Writing Competition judges. We featured her YouTube video recording in which she introduces the story writing and illustrating competition and shares with viewers her top writing tips.


Friday Fundraisers - our Welly Walkers
We featured all the families who have already signed up to take part in the Welly Walk for Raindrops on Saturday 19 and Sunday 20 June and encouraged others to take part to help fundraise and raise awareness of nystagmus.

Sam's North coast 500
Sam sets off on Saturday 5 June for the challenge of a lifetime as he cycles over 500 miles in 8 days around the north coast of Scotland. Our Chairman, Tim, will be driving the support vehicle and sending us Sam's "notes from the saddle" along the way.

You can sponsor Sam here

 
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