It's the abseil this weekend

This Sunday morning Claire A, Claire B, Glen, Matt, Richard B, Richard P, Tom, Vanessa, Vicki and Vicky will be scaling down the UK’s tallest piece of public art, the ArcelorMittal Orbit at the Queen Elizabeth Olympic Park to raise money for nystagmus research at Moorfields and University College, London.

Our 10 intrepid Team Nystagmus Network abseilers were set a sponsorship target of £250 each. At the time of writing they’ve already far exceeded that target and look set to be able to make a real impact on funding for nystagmus research over the coming months.

We wish them all well on behalf of the entire nystagmus community.

Good luck, everyone!

Find their stories on our blog


Why we need funding for research

When it comes to investment in medical research in the UK, funding for eye disorders is near the bottom of the list. 

Representatives from UK nystagmus research teams at Moorfields, Cardiff, Sheffield, Plymouth and Southampton meet later this month at the Nystagmus Network research conference to look at ways of collaborating to make every single pound of funding go further. We all want better testing and diagnostics, treatments, prevention and, ultimately, cure.

All this takes time, knowledge, dedication and funding. The expertise is there. We can make sure that the funding is, too.


Well done, Bronagh and Susan!

Last weekend Bronagh and Susan took part in the Spartan Scotland challenge. That's a lot of running, a lot of obstacles and an awful lot of mud! They managed to complete the full course in just 3 hours. They've also raised a lot of money for the Nystagmus Network.

Huge thanks to both of you!


Sponsor Bronagh and Susan here


Harry's back at school!

All through the school summer holidays we've been following the story of Harry, as told by his Dad, Ian, as he underwent the Anderson Kestenbaum procedure to address the head turn associated with his null point.

We're happy to tell you that Harry was well enough to return to school at the beginning of term.

Read more here

See you at Open Day 2018

Booking closes at 5pm this Friday, 21 September, for the biggest UK nystagmus event of the year. If you're planning to join us, to avoid disappointment, please make sure you order yours in time.

We look forward to seeing you in Birmingham.

Get your ticket here


Still to come in this issue of FOCUS

  • supporting musical children with vision impairment
  • nystagmus and benefits information update
  • please remember us

Little Amber - there to nurture musical talent

The Nystagmus Network's Rachel has secured a grant from The Amber Trust to support the burgeoning musical talent of her twin boys, who both have nystagmus. Parents can apply to the trust for music lessons for children with vision impairment.

Read more here

DLA, PIP and Nystagmus

The Nystagmus Network is indebted to our volunteer benefits adviser, Mike Hughes, for supplying us with an annual update of benefits information for adults and children with nystagmus.

The document is available now, free to download from our website

Mike will also be with us at Open Day running workshops on PIP and DLA applications and answering your queries at lunch time drop ins.

Thank you, Mike

Download here

Please don't forget us

The Nystagmus Network relies entirely on membership subscriptions, the generosity of your donations and the hard work of our fabulous fundraisers. We cannot continue our work without that financial support.

Gifts in wills are particularly valuable to a tiny charity like ours. 
We understand that provision for family, friends and loved ones must always come first. All we ask is that you remember us, too.

Your lasting gift could make a huge difference to the nystagmus community. It might help us fund that elusive piece of research which leads to a cure for nystagmus. That would be quite a legacy, wouldn't it?


Please remember us in your will

Sign up for Gift Aid today! 

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? Already donated? You can still sign up today to help us claim your tax.

This means a huge amount to a small charity like us and costs you absolutely nothing.

You can sign up to Gift Aid by clicking the link below. Thank you.

Please sign up for Gift Aid here

Please consider making a donation 

The Nystagmus Network relies entirely on membership subscriptions, fundraisingdonations and gifts in wills 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

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