Copy

You are amazing!

Thank you to everyone who organised a 'nystagmus in the open event', put up displays, told everyone they met about nystagmus, gave out flyers, wore a t-shirt or bought a cake on Nystagmus Awareness Day 2018.

Thanks to you, there are literally thousands more people in the world who are now nystagmus aware. But, as one Mum said, "If one person is more aware of nystagmus, it's been a success."

You made our very first Nystagmus Awareness Day in the summer time truly amazing. We can't wait for 20 June 2019!

Read all the best stories here

How amazing are ...?

Sara has nystagmus and albinism, but she has a wide circle of friends and loves all kinds of sports. Macy was born with lots of other health conditions as well as nystagmus, but she doesn't let any of them stop her! Chris is known to many of us for her encyclopaedic knowledge, which she so generously shares on Facebook, but did you know that she's also a seasoned broadcaster? Denni-Leigh has just turned 16 and her Mum is so proud of the accomplished young woman she has become. 

Read all our amazing stories here

 

You're the icing on our cake!

There were so many displays and presentations in schools and hospitals last Wednesday and loads of 'nystagmus in the open' events. Most of them seemed to involve quite a lot of cake.

Billy held a cake stall at Mary Elton Primary School with help from Mum, Jo, the staff and children and his lovely Grandmas!

Meanwhile, over at Acton Primary School, Joshua was busy selling popcorn and Nystagmus Network wristbands to staff and pupils. His Mum, Jen, says: "The school and teacher, Mr Gray, have been very supportive of Joshua. Not only have they made his learning fully inclusive, but they've embraced Nystagmus Awareness Day, which has meant so much to him."

At Sabden Primary school, 6-year-old Constance and her Mum, Jenet, were busy selling cakes and running a raffle while Dad, who has nystagmus just like Constance, was giving a talk to the children. The family raised £333!

Well done and thank you everyone!

Read more Nystagmus Awareness Day stories here

How amazing are ... ?

With the help of adapted sheet music, James has learned to read music and has passed his grade 3 in guitar. Ben has had so many hospital appointments to put up with, his Mum doesn't think any other child would be able to stick it. But Ben is a resilient young man. Dave's nystagmus hasn't stopped him from becoming a quarter finalist on Britain's Got Talent. Not everyone with nystagmus can drive, but Bradley has turned driving with nystagmus into his philosophy on life.  

Read all our amazing stories here

 

Students join in the fun

Students at Royal National College, Hereford, where there are over 30 young people with nystagmus, marked Nystagmus Awareness Day by enjoying jelly at lunch time in the canteen. 

Orthoptics students at the University of Sheffield found time between exams and the summer vacation to run a nystagmus awareness stall.

Thank you! We hope you all had a brilliant day!

Read more Nystagmus Awareness Day stories here

 

Members only tickets - booking opens TODAY!

Subscribed members will by now have received their exclusive links to book their free places at Open Day 2018. In order to keep costs manageable, we can accommodate only 200 people, so please make sure you will be able to attend before you book your ticket. We can't afford to waste a single place.

Any remaining tickets will go on sale to non-members from 26 July at a cost of £27 per adult, £10 per child.

Become a member

 

Well done and thank you to all our amazing Nystagmus Awareness Day runners and racers!

Jac and his friends ran the 2.5k fun run for Nystagmus Awareness Day and raised a whopping £740. An amazing achievement! Thank you!

Read more Nystagmus Awareness Day stories here

 

Trustees meet Marsha

A group of Nystagmus Network trustees travelled to London on Monday 18 June to mark the beginning of 'wobbly week' to meet Marsha De Cordova MP, Shadow Minister for Disabilities at Portcullis House. Marsha has nystagmus herself and was very interested in the work of the charity, in particular the area of education advocacy. Marsha will be our keynote speaker at Open Day 2018.

Read more about Open Day here

 

Nystagmus Network trustees at Paddington

To celebrate 'nystagmus in the open', a group of Nystagmus Network trustees conducted a charity fundraising collection at Paddington Underground Station, London. They raised over £150 and spoke to lots of people about nystagmus.

Make your "nystagmus in the open" donation here

 

Snow Camp 

We're hugely grateful to Jamie Fuller for giving up Father's Day to host the first Nystagmus Network Snow Camp of 2018. Adults and children enjoyed lots of fun in the snow and were also inspired by the Outspan Rebels VI ski team, stars of track and field, internationally acclaimed 'blind' photographer, David Katz and PyeongChang Paralympic gold medallists, Menna and Jen.

Our next Snow Camp is on Sunday 15 July. There's still time to sign up.

Sign up for snow camp

The truly inspirational David Katz

Nystagmus Network trustee, Peter, and Information Development Manager, Sue, travelled to London during 'wobbly week' to meet David and his partner, Maayan. David will be our guest speaker at Open Day, so there was lots to talk about, with some very exciting new projects coming up.

Watch David's film here

Could you leap for nystagmus research?

The Nystagmus Network is partnering with Moorfields Eye Charity to offer you the opportunity of a lifetime, to abseil down the ArcelorMittal Orbit at the Queen Elizabeth Olympic Park, London to raise money for nystagmus research at Moorfields Eye Hospital and University College London.

Do you have what it takes to raise money for pioneering nystagmus research?

Find out more here

 

The #nystagmusintheopen Thunderclap!

Thank you to everyone who signed up for the Thunderclap. Thanks to you we reached 68,000 people and social media was alive with #Nystagmus and #NystagmusInTheOpen posts and tweets throughout Nystagmus Awareness Day.

Read our Facebook posts here

 

Sue's garden is pompomtastic!

Over 100 woolly pompoms in Nystagmus Network colours greeted visitors to Sue's garden on 24 June, to mark the end of 'wobbly week'. There was so much to see and do and lots and lots of delicious cake! Sue's 'nystagmus in the garden' event raised over £200.

On Nystagmus Awareness Day itself, Sue shared her own personal story of nystagmus and explained why raising awareness of the condition is so important.

Read Sue's nystagmus story here

 

The Big Blind Walk is complete!

On the final leg of his 55 day, 1,089 mile Big Blind Walk, Julian Jackson was supported by friends and supporters, including photographer, David Katz.

Congratulations, Julian, on your fantastic achievement from everyone at Nystagmus Network. We're so proud to have supported you every step of the way.

Read the story of the BBW here

Sign up to Easy Fundraising for free donations 

Every time you shop online you could raise a free donation for the Nystagmus Network. All the major retailers are part of the scheme and there are some great deals on holidays just now. So please sign up today and feel good every time you shop.

Please sign up today

Please consider making a donation 

The Nystagmus Network relies entirely on membership subscriptions, fundraising and donations to continue its important work, providing support and information to the nystagmus community, raising awareness and funding research.

We can't do any of this without your support.

Please donate today

Do you follow us on social media? Join in our daily conversations on Facebook and keep up with all the latest #nystagmus news on Twitter.

You can unsubscribe from Focus

Members of the Nystagmus Network are automatically signed up to receive this fortnightly digital newsletter every other Thursday directly into their inbox. We believe it's a great way to let you know all the latest nystagmus news and keep you informed about events and research participation opportunities. Other subscribers include our fundraisers, donors and supporters. Please remember that there is an unsubscribe button at the bottom of each and every issue, so if, at any time, you decide you no longer wish to hear from us, please simply click the link.

Missed any issues?
You can read all our back numbers in the online archive.

 

Welcome to all our new readers!

Unsubscribe from this list
Copyright © 2018 Nystagmus Network, All rights reserved.


Want to change how you receive these emails?
You can update your preferences or unsubscribe from this list.

Email Marketing Powered by Mailchimp