Tickets to the biggest UK nystagmus event of the year will soon be available to book. Subscribed members of the charity will be able to book their priority free tickets to our annual Open Day from 12.00 midday on Thursday 26 June. Members will be notified with details of how to book their places by email or post.
Any remaining tickets will go on sale on a first come, first served basis to non-members from Thursday 26 July at £27 per adult, £10 per child.
Katrina thinks she’s just a regular student who happens to have nystagmus – we think she’s an amazing nystagmus ambassador!
Here’s Katrina’s nystagmus story …
I am 19 years old. I attended a mainstream school and was treated like everyone else. I felt no different. In my exams I had A3 papers and extra time, which helped a lot. I came out of school with 9 GCSEs. My career goal is to gain an apprenticeship doing Business Administration or Digital Marketing. The person who inspired me was my Grandad. I always looked up to him. Now I’m at college and I also volunteer with Youth Zone and Shopmobility doing administration work, which I thoroughly enjoy.
What Katrina didn’t tell you is …
In May 2018 Katrina joined the Big Blind Walk!
Katrina spent some time walking with Julian Jackson as his Big Blind Walk took him through Carlisle and on to Scotland. She told Julian all about nystagmus and how it affects her.
Katrina says:
“It was an absolute pleasure to meet Julian and to walk with him.”
Julian messaged us to say:
“I was delighted to have Katrina walk alongside me for a distance out of Carlisle early this morning. We discussed her Nystagmus and I am so grateful for the support she has given the Big Blind Walk.”
We say:
“Well done, Katrina. Fabulous nystagmus ambassador!”
Nystagmus Network trustees Peter Greenwood and Sam Jones completed the London Vitality 10k on Bank Holiday Monday and raised over £1,000 between them for the charity.
Nystagmus Network Chairman, Richard Wilson OBE, added his thanks and congratulations to both runners and commented:
“Brilliant dedication to a great cause.”
At 12 midday on Wednesday 20 June, Nystagmus Awareness Day, we can get the whole world talking about nystagmus across Facebook and Twitter. All you need to do to take part is follow this link to sign up. Please join us to get the word nystagmus rippling out across the world.
On national and international Nystagmus Awareness Day, Wednesday 20 June, why not help us really get ‘nystagmus in the open‘ by joining Julian Jackson on one of the final legs of his 1,000 mile Big Blind Walk?
On that day Julian will be walking from Helmsdale to Dunbeath in the Scottish Highlands along the A9 John O’Groats Trail. If you can be there to cheer him on, please let us know and we will send you a free Nystagmus Network T-shirt to wear.
Julian is walking to raise £300,000 for sight research. That will be good for all of us. He deserves our support.
To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.
If you can join Julian for just one of the 1,000 miles he plans to walk for sight research, or stand at the side of the road as he passes through your town or village, you’ll be in very good company. There will be lots of other people there who suffer from visual impairment and sight loss. You might also see one or two celebrity faces along the way.
The BBC’s Countryfile Team will be filming Julian as he sets off from Land’s End on Sunday 29 April and presenter, Matt Baker, has promised to walk at least some of the route with him. So please turn out to cheer them both on if you can and then remember to tune in to the show later.
If you can’t get to Cornwall, please check the rest of Julian’s route. Maybe you could join Nystagmus Network trustee, Marie, in Frodsham or the ladies of the Keswick WI up in the lakes. And who could resist seeing Julian complete his marathon walk in the Scottish Highlands in June?
Please contact us if you are going to join Julian on the walk and would like a free Nystagmus Network T-shirt to wear.
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Nystagmus Network trustee and golfing enthusiast, Peter Greenwood, traveled to Studley Wood Golf Club in Oxfordshire earlier this week to receive, on behalf of the charity, a cheque for £4,300. The money had been raised during the year at various events by club members, their friends and families after club captain for the year, Mike Lawton, nominated the Nystagmus Network as his captain’s charity of the year. Mike’s daughter, Lucie, has nystagmus and is also a big Nystagmus Network fundraiser. She ran the London marathon for us last year.
Huge thanks to everyone at Studley Wood GC, and especially to Mike and Lucie.
Jamie and Josh Fuller are well known in the nystagmus community as the father and son team who delivered an inspirational presentation at Open Day last September. Jamie organised the Nystagmus Network’s first ever ski experience last year and this year they have promised us not one but two ski camps.
The Outspan Rebels VI ski team have enjoyed a very busy few months, kicking off with their Snow Camp in Hinterlux in October. This involved race training and technical skills with their head coach, Charlotte Evans MBE. Team founder, Jamie, said: “It was brilliant to get out to the mountains with a couple of days of challenging weather. High winds and white out conditions made guiding interesting, to say the least. It tested all our skills, especially those new to glacier conditions. On the upside, the bad weather brought fresh snow and some fantastic skiing.”
Then it was back home to the Milton Keynes snow dome for the mixed ability and disability races. The VI skiers performed well in the competition, with Josh, coming up against some very tough competition in his age group. His hard work paid off. He is currently in gold medal position!
Other young visually impaired skiers making huge progress this season are Darcy, new to racing and working with her new guide, Katherine; guide Jim and 10 year old Hester, now skiing under the fantastic team name of ‘Jester’; shy and retiring Charlie, also known as ‘The Monster from Manchester’ once out on the piste; and 11 year old Sam who has been working out in Italy with his guide.
During the Winter Paralympics in Pyeongchang the Channel 4 presenting team, including Outspan Rebels’ head coach and Sochi gold medal winner, Charlotte Evans MBE, were all based at the Snow Dome which meant that the rebels themselves had several opportunities for a brush with fame.
Later this month the Outspan Rebels will be off to Tignes in France to compete in the British Alpine Championships. There they will be rubbing shoulders with more stars: Dave Ryding, Alex Tilley and Millie Knight, along with gold medallists Kelley Gallagher and Menna Fitzpatrick and they will be racing on world cup courses!
Did you know that for every pound you donate to the Nystagmus Network and for every pound of your annual membership subscription we can claim an additional 25p back from the UK government, provided you are a UK tax payer? This means a huge amount to a small charity like us and costs you absolutely nothing.
Charities are missing out on £600m because people are not enabling them to claim Gift Aid on donations, according to government research out today. You can read more, here.
We have paper and electronic Gift Aid forms. So please contact us today to make sure you are signed up to Gift Aid or complete the form below. Thank you.
We are just finalising details of our annual Open Day 2018. We shall once again be in central Birmingham. The date is Saturday, 29 September. The venue is the same as last year, the MacDonald Burlington Hotel, across the road from Grand Central.
We already have some very exciting speakers lined up. We will also be joined by teams of research scientists from the leading nystagmus centres across the UK. Each team will have the opportunity to present their latest research findings and recruit willing participants to new studies and trials. Delegates will also have the opportunity throughout the day to speak one-to-one with research and medical experts.
Education and benefits experts will be on hand to answer your individual questions.
There will be bespoke sessions for adults with CN or AN, parents of children with nystagmus and, not forgetting, the children and young people themselves.
Throughout the day there will also be inspirational presentations, interactive workshops and fun activities for everyone to attend together, to make sure that everyone gets the most from their day.
We look forward to having you with us.
Priority booking for members of the charity will open shortly. Members will be notified personally.
