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A Christmas message from Tim

Tim Cuddeford, Chairman, Nystagmus Network

As we reach the end of 2020 it is an absolute pleasure to wish you a very Merry Christmas and Happy New Year.
 
The year has been immensely challenging for all charities, as income from traditional fundraising methods dried up whilst the needs of those we support changed and grew.
 
Fortunately, Sue and her team have been able to continue to provide support and information services, albeit virtually, thanks to the receipt of £15,000 in grants from the National Lottery Community Fund and Coronavirus Community Support Fund.
 
In addition, we received over £9,000 from the BBC Radio 4 Appeal, broadcast on Sunday 5 July, presented by TV producer, presenter and now, author, Richard Osman. Richard was kind enough to say that it was his absolute pleasure to be able to support the charity in this way.
 
Significant, socially distanced fundraising also took place, thanks to our intrepid supporters. Some highlights are:
  • Mike Larcombe, originally from Southampton, walked the entire length of the North and South Island of New Zealand from December 2019 to March 2020. His Walk for Wiggly Eyes raised almost £2,500 and a huge amount of awareness along the way. Mike has nystagmus himself, as does his little nephew, Archie, whom he has not yet been able to meet due to travel restrictions.
  • Alysha and George Patel walked or ran 1000km during lockdown for their little son, Rory and raised over £1,000.
  • Milly, Zoe and Toby Greenslade ran or cycled 100 miles each in 30 days – a great way to spend their allocated time outdoors. They raised over £1,500 for the Nystagmus Network in honour of Milly’s daughter, Florence.
  • Claire Mason finally completed her much postponed sky dive for the Nystagmus Network. She raised £420 and made her son, Zak, very proud. Both Claire and Zak have nystagmus.
 
Nystagmus Awareness Day – 20 June
 
Despite the restrictions still in place, our supporters were out in force. Trudy Urqhuart, her son Tyler and even the dog walked 100 km and raised £355.
 
We had the usual huge response to your ‘amazing’ nystagmus stories and 15-year-old Wilson won the ‘wobbly’ photography competition (and broke everyone’s heart!) with the view from his bedroom window. He sends a photo home to his Mum every night from school and she secretly entered one of them in the competition.
 
Research
 
We have been investing in nystagmus research for 30 years or more and I’m delighted to say this year is no exception. We have already awarded a small grant to a team at the University of Leicester to investigate the development of AI to monitor and track nystagmus eye movements.
 
Applications are currently being considered from a number of institutions for a new nystagmus PhD studentship. The successful applicant will be announced early next year.
 
Both of these awards are thanks to our partnership with Fight for Sight.

We also funded some equipment for the nystagmus research team at the University of Cardiff to continue eye movement recordings in the home until it is safe for research participants to return to the clinic.
 
Virtual Open Day and Night in with the Nystagmus Network
 
We had our first ever virtual Open Day and Dinner on Saturday 3 October with 611 attendees, many more than a normal Open Day. Whilst we are looking forward to all being able to meet face to face again, the new format was inspiring and we will look to adopt more virtual events in the future, perhaps in combination with traditional meetings.
 
Looking Forward to 2021
 
We will start 2021 with renewed optimism about the future. We will continue to provide the much-needed support to the nystagmus community and develop new digital and virtual services, alongside the more conventional ones, for the benefit of everyone who needs us.
 
In the meantime, enjoy the holidays, stay safe, and I look forward to seeing as many of you as possible again next year.

Tim, Cuddeford, Chairman, Nystagmus Network
Wishing our Members a very Happy Christmas and a safe and healthy New Year
Copyright © 2020 Nystagmus Network, All rights reserved.


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