Category: Charity highlights

Open Day tickets on sale now!

Tickets for the Nystagmus Network Open Day 2018 go on general sale at midday today. With a packed line up of speakers and presenters, including Marsha De Cordova MP, Shadow Minister for Disabilities and David Katz, internationally acclaimed ‘blind’ photographer, alongside presentations from the UK’s top nystagmus research teams and workshops on education support, benefits, technology and mobility, you won’t want to miss out on the biggest nystagmus event of the year.

Book your ticket TODAY by clicking this link.

Simon in Nystagmus Network T shirt.

Well done, Simon! He did it!

Simon jumped out of a plane for the Nystagmus Network this morning and has raised over £1,000 for the charity!

Fresh back from a family holiday, Simon took to the skies earlier this morning, courtesy of the Red Devils Parachute Regiment Free-fall Team.

Simon’s sky dive was watched by friends and family, his wife, Sara and their children, including son, Charlie, who has nystagmus.

Congratulations Simon!

You can still SPONSOR SIMON HERE. Thank you!

If you’d like to leap from a plane for nystagmus, get in touch today!

Charity trustees meet Marsha

On the Tuesday of ‘wobbly week’ 2018, a group of trustees were invited to Parliament to meet with Marsha De Cordova MP, Shadow Minister for Disabilities. Marsha has nystagmus herself and understands the challenges of accessing the necessary adaptations to make her parliamentary career possible.

Meeting at Portcullis House, trustees, all wearing their Nystagmus Network T-shirts, briefed Marsha on the awareness-raising work of the charity ahead of her keynote speech at Open Day this September.

Menna and Jen are coming to Snow Camp!

The first Nystagmus Network Snow Camp of 2018 takes place this Sunday, 17 June, at Snozone Milton Keynes. Lots of families have signed up to enjoy a day of sledging and skiing alongside the famous Outspan Rebels VI ski team. Their chief coach, Charlotte Evans MBE, will be on hand with training hints and tips and internationally acclaimed photographer, David Katz will also be there.

Not only that – but we’ve just heard that Paralympic ski super duo, Menna Fitzpatrick and Jennifer Kehoe will be there! Menna and Jen won one gold, two silver and a bronze medal in the Pyeongchang Paralympics earlier this year. What better inspiration for our nystagmus skiers?

Read more about Menna and Jen here.

How amazing is Rosine?

Hi there. I just wanted to share with you the amazing journey I’ve embarked on in Blind Tennis, a sport that has given me my freedom, my independence and my life, whilst living with Nystagmus, strabismus and astigmatism! A couple of weeks ago I was part of the team of 8 representing Great Britain in the second international blind tennis tournament, where I finished second in the world (behind Chris Baily) and won silver! I’m super keen for others living with nystagmus to come and try VI/Blind Tennis and for them also to discover their potential!

Read my story here.

 

Open Day tickets for members – available soon

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.

How amazing is Katrina?

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 in the open and the Big Blind Walk

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.