Weekly digest, 25 June 2021
Social media posts, events and highlights of the past 7 days
It was a bumper week for Facebook posts, Tweets and Instagram messages as we celebrated Nystagmus Awareness Day 2021.
The Welly Walk for Raindrops
The Welly Walk took place on 19 and 20 June, to mark Nystagmus Awareness Day 2021. We featured our supporters Bethany Murphy, Melinda Edwards, Victoria Legg, Kim Johnson, Fiona Greenwood and Shelley Mulville and thanked all our other Welly Walkers raising funds through their Just Giving pages.
RNIB Connect Radio
Sue appeared on Allan Russell's RNIB Connect Radio programme with Fiona Sandford, CEO of Visionary UK to talk about the Nystagmus Network, our Raindrops campaign and International Nystagmus Awareness Day.
Raindrops Photography Competition
We took the opportunity to feature some of the entries submitted for the Raindrops Photography Competition and encouraged everyone to take part and send us their photos.
Raindrops Competitions - deadlines
We announced that we had extended the deadline for the Children's Story Writing Competition and the Adults' Photography Competition until 30 June 2021 to give everyone a little extra time to submit their entries. We also said a big thank you for all of the amazing entries so far.
Nystagmus Awareness Day 2021 - Events programme
We announced the publication of our digital events programme for Nystagmus Awareness Day, containing all of the links to enjoy the videos, workshops and presentations.
Nystagmus Awareness Day
We wished everyone a very happy Nystagmus Awareness Day on Sunday 20 June. The post received 97 likes and was shared 149 times!
Nystagmus - The Way We See It video
We shared the video, The Way We See It featuring BBC TV presenter Richard Osman. Harriet, Rosie, Richard and Will all talking about what it's really like to have nystagmus and how it impacts their lives.
All our nystagmus information documents are newly revised and updated this month. We invited everyone to visit our website and download their free copies.
Welly Walk Photographs
Many of those who took part in the Welly Walk shared their photographs with us and we featured them throughout the day.
Just Giving - 100 donations
By 12.30 pm on Nystagmus Awareness Day, we had received 100 donations through the Justgiving campaign page, The total raised currently stands at just over £2,000!
Signs and Gestures
On Nystagmus Awareness Day, The University of Edinburgh and VocalEyes released a short film entitled "Signs and Gestures". The film was made by staff and students, starred a young actor, Grace Whitford who has nystagmus and demonstrated how film production can be made more accessible to actors with either a visual or hearing impairment. We were proud to support this very special film premiere.
True life Nystagmus Stories - 1
We shared an account of life during a global pandemic experienced by a man living with with Congenital Nystagmus. We encouraged our followers to read his story Congenital Nystagmus - one man's story which explores the challenges of the past 18 months.
True life Nystagmus Stories - 2
We featured the thought provoking account of one woman's struggle to come to terms with Acquired Nystagmus. Acquired Nystagmus - one woman's story reflects on her thoughts and feelings as she has faced the challenges and frustrations of diagnosis.
How amazing are you?
To celebrate success on Nystagmus Awareness Day, we encouraged everyone to share their amazing stories and read those already submitted.
Happy Father's Day
We wished an especially Happy Father's Day to nystagmus dads everywhere.
We featured Tim Cuddeford, our Chair of Trustees in his Welly Walk attire (T-shirt and wellies) and expressed our gratitude and thanks to everyone who helped raised awareness on Nystagmus Awareness Day. We reminded our followers that we will continue to raise awareness today and every day and support the nystagmus community.
We featured our online digital information document Nystagmus is ... a guide for adults, written by people who have the condition themselves.
We updated our profile picture which now features the Nystagmus Network "eye" logo complete with our new Trade Mark.
Open Day 2021.
We announced that the Nystagmus Network Open Day is scheduled to take place on 25th September 2021. It will be another virtual event but will include a full range of presentations, workshops, activities, forums and competitions.
Nystagmus Forums - July 2021
We published our schedule of monthly forums for July 2021.
- Nystagmus Network Parents' Forum - Tuesday 3 July, 8pm
- Acquired Nystagmus and Oscillopsia Forum - Wednesday 21 July, 5pm
- Adults with Congenital nystagmus Forum - Thursday 22 July, 7pm
We shared Wyatt's story and encouraged others to share their nystagmus success stories, too.
We announced the prizes for our Raindrops story writing and drawing competition, which include signed books and bookmarks from the author Tim Pearce and a bundle of books from our friends at Bookwagon.
We announced that the Nystagmus Network and Fight for Sight have jointly funded two new nystagmus research programmes thanks to the generosity of our supporters. Dr Frank Proudlock and Dr Mervyn Thomas, both based at Leicester University are leading the research programmes.
This week's Friday Fundraiser is Trudy, a greatly valued supporter who is once again pulling out all the stops and getting the whole family involved in a fundraiser for the Nystagmus Network.
Movement for Good
We thanked everyone who nominated us to receive a £1,000 donation from Ecclesiastical as part of their Movement for Good campaign. We are delighted to announce that we have won one of the 500 donations.