Copy

 

How amazing are you?

If you or someone you know has achieved something amazing despite having nystagmus, or maybe even because they have nystagmus, we want to hear your story.
We're looking for the greatest nystagmus achievers, adults or children, so we can share their incredible stories in the run up to this year's Nystagmus Awareness Day on 20 June.

Send us your amazing nystagmus story

 

Sue attends APPG meeting on eye research

Sue was delighted to accept the invitation of Fight for Sight CEO, Michele Acton, to attend a meeting at the House of Commons of the All Party Parliamentary Group for Eye Health and Visual Impairment. The meeting, chaired by Lord Low, was attended by representatives from ophthalmology, research, government departments and the charity sector.

Sue found the meeting upbeat and positive and commented: 

“When my daughter was diagnosed with nystagmus in 1991 an ophthalmologist told me then that there was no money in nystagmus research, and nobody wanting to do it, because it simply wasn’t exciting enough. How proud I am to be able to work with the Nystagmus Network, in partnership with Fight for Sight, to continue to turn that around.”

Picture courtesy of Secret Earth.

Read Sue's report here

 

Nystagmus Network research grant awards

Fight for Sight has this week announced a call for Small Grant Award applications. The UK’s leading eye research charity is this year able to offer thirteen awards in total to fund sight saving clinical research, ten of which are being jointly funded with other charities, two of them with the Nystagmus Network.

NEW THIS YEAR Fight for Sight / Nystagmus Network offer TWO Small Grant Awards

For 2018 there are two awards for clinical research projects focusing on quality of life or causes (including genetic), diagnostic testing / analysis or treatments.

Michele Acton, Fight for Sight’s Chief Executive, said: “Fight for Sight’s mission is to stop sight loss and we are delighted to be able to work in partnership with others to help deliver our mission.”

Read more here

 

Nystagmus Network Snow Camps 2018

We're still taking bookings for sledging and skiing at our two Snow Dome events this summer. You can join Jamie and Josh Fuller, Charlotte Evans MBE and a host of other skiers and guides for a fun day on the slopes for all the family.

Reserve your place here

 

Please join our Nystagmus in the Open thunderclap!

At 12 midday on Wednesday 20 June, with your support, we can get the whole world talking about nystagmus on social media. All you need to do is sign up to tweet or post and there'll be a nystagmus thunderclap rippling across the world.
How cool is that?

Sign up to the thunderclap here

 

The Big Blind Walk has begun

Julian Jackson set off on Sunday on his 1,000 mile walk from Land's End to John O'Groats. Today is Day 5 which sees Julian stride across the border from Cornwall into Devon. Please support him if you can. He's doing this for vision impairment, sight loss and eye research, which means
he's doing it for all of us.

Read more here

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.

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