Blog

Could you do something extraordinary for nystagmus?

In 2018 we’re looking for people who want to do something amazing. We’ve got lots of opportunities lined up and we’re ready to give you masses of support to follow your dream. So whether it’s a mountain trek to Kilimanjaro you fancy, a London to Paris bike ride or something a bit nearer to home, we’ve got the bucket list adventure for you.

If personal challenges are what floats your boat, try this.

Or if sky dives are more your thing, click here.

To talk to us about how we can achieve your personal goal together and fundraise for the charity at the same time, please contact us here.

Nystagmus Network launches new information and support line

Anyone needing information or support from the Nystagmus Network can now speak to someone on the phone throughout normal office hours. From Monday to Friday, Sue will answer the phone whenever she is available. If she happens to be away from her desk, or in the evenings and at weekends, you can leave a message. Then Sue, Rachel or Sara will call you back.

The number to call is 01427 718093

Alternatively, if time is short, you can continue to use the [email protected] email address for all enquiries, or request support and information through our contact form.

This new service is thanks to BT telecomms engineer, Jason, who braved the falling snow to install our new landline. Thank you, Jason!

 

The Nystagmus Network supports Julian’s Big Blind Walk

Julian Jackson lost his sight in 2010 as the result of an inherited retinal condition. Since then he has become a visual impairment champion. He has worked with a leading eye research organisation and, through his own social enterprise, VisionBridge, campaigned to bring sight loss and the need for more research to public awareness. His work has gained momentum and he is now partnered with researchers, eye health professionals and members of the visually impaired community across the UK.

What is the Big Blind Walk?

Julian is seeking to raise awareness of and funding for sight research, for too long seen as a ‘cinderella’ branch of medicine. He has previously tandem cycled from John O’Groats to Land’s End, but this year he plans to walk back along the entire 1,000 mile route, from the bottom to the top of the UK. He thinks it will take him around 7 weeks.

He will set off from Cornwall on Sunday 29 April, when the BBC1 Countryfile team will be there to film him. If all goes to plan, Julian hopes to arrive in the far north of Scotland by around 22 June.

Why is the Nystagmus Network supporting Julian?

The Nystagmus Network promotes and funds research into nystagmus, but we are only a small charity with limited resources. If we support Julian to raise the profile of vision loss and the need for research, as well as a large pot of money which eye sight researchers can bid for, we can all benefit.

Richard Wilson OBE, Chairman, Nystagmus Network, writes: “The Nystagmus Network is delighted to support Julian and his Big Blind Walk, because we believe wholeheartedly in his mission to raise awareness of sight health and foster innovative research.”

How can I take part?

In support of Julian’s endeavour, the Nystagmus Network is asking members of the nystagmus community simply to get out there and cheer Julian on. If you live close to Julian’s route, you can follow his interactive map to find out when he’s passing by. Why not walk a section with him? He would be very glad of the company.

If you’re planning to walk with Julian, please let us know and we will send you a Nystagmus Network T-shirt to wear. It will make it easier for you to meet other people affected by nystagmus in your area, help Julian publicise his walk and raise awareness of nystagmus, too.

A thank you from Julian

“I’m so grateful to the Nystagmus Network for not only supporting my Big Blind Walk to improve awareness and understanding of the social, economic and psychological impact of sight loss amongst a growing number of the UK population, but also in promoting and raising money for eye research, which I believe is one of the most underfunded areas of medical research and certainly one of the best kept secrets in the UK!”

Thank you for your support.

Do you use audio description to watch TV?

Research participation opportunity

If you use audio description services to watch TV, you could help Victoria, from the University of Seville, with her survey of VI friendly TV.

Please read on …

My name is Victoria García-Prieto and I work at the University of Seville (Spain). I am currently conducting research on accessible television for people with disabilities. I have designed a brief online survey to find out what people think of subtitling, audio description and sign language services on the BBC.

To thank you for your participation, at the end of the survey please leave your email address and you will be put into a draw to win two hotel nights for two people. Your answers will remain totally anonymous.

Victoria has promised to share with us her research findings.

Magnets and nystagmus – research news update

Researchers at University College London, Moorfields Eye Hospital, and the University of Oxford are developing magnetic implants to treat nystagmus. Last year, Nystagmus Network assisted Dr Parashkev Nachev, from University College London, in recruiting suitable candidates with the acquired from of nystagmus to take part in the next stage trial, following initial success with a single subject.

Read the full update here.

Nystagmus research news update from Dr Helen Griffiths at Sheffield University

Helen and her team are working on a virtual reality solution for the problematic sympton of oscillopsia in Acquired Nystagmus.
Helen writes:
“Many thanks to you all at Nystagmus Network and to your partners Fight for Sight for your support, allowing us to continue the VR project work. We have started and have been able to develop a method for the camera within the headset to record eye movements and convert this signal into the visual scene presented in VR. We are pleased with this progress so far.
I hope we can be successful in providing a method for some relief for AN.
We hope to have ethics approval for the device trial in the next 2 to 4 weeks and so I’ll be in touch about recruiting suitable trial participants.”
Nystagmus Network will post details of opportunities to take part in this and all other nystagmus research trials here.

Mousetrap VI Theatre Trip

If you would like to take part in a family event especially for children and young people who have a visual impairment, Nystagmus Network is offering you the opportunity to join a special London theatre experience for families.

The Little Match Girl and other happier tales

For adults and brave children alike, expect music, puppetry, dark magic… and perhaps some modern truths that we would all rather remain hidden.
  • Sam Wanamaker Playhouse, 21 New Globe Walk, Bankside, London SE1 9DT
  • Sat 7 April, 10.00am to 3.40pm
  • £10 for young people (18 and Under), £12.50 per adult
  • Age 9+
These tickets are offered to family groups where one or more of the children in the family have a visual impairment, and their sighted siblings. Maximum of 6 tickets per family.

 

For full details and how to book, please click the link to Mousetrap Theatre Projects.

 

Fancy doing a sky dive for Nystagmus Network?

Last year the charity held its first ever fundraising skydive. Luke Sargent jumped out of a plane while his young son watched proudly. Imagine that!

Now we’ve signed up with UK Skydiving Adventures so anyone can have a go. Simply follow the link to the website and get yourself signed up.

It’s just one brave leap from a plane, but it could be a huge step forward for nystagmus research!

Thank you John and Crane Valley GC

Thanks to John Gray and his Dorset golf club for their generosity, the Nystagmus Network will be able to continue to invest in research. John had no hesitation in nominating the Nystagmus Network as his captain’s charity of the year when he took up the reins as captain of Crane Valley Golf Club in 2017.

His choice was in honour of his young grandson, Caleb, also known by everyone as CJ. CJ was born with nystagmus. John’s goal was to raise awareness of the condition throughout the membership and beyond and also to raise funds for the charity.

John achieved both of these things, even meeting another family with a child who has nystagmus along the way.

CJ was there to help Grandpa with all the big club occasions, too. The highlight of the year was a fun day with a Pirates of the Caribbean theme and disco in the evening, with CJ as the guest of honour.

John’s year as captain ended this month with the AGM and presentation evening. Nystagmus Network trustee, Peter Greenwood, himself a keen golfer, went along to receive a cheque for £5,114.50

Thank you to everyone who contributed: Crane Valley GC members, friends and family, to CJ for helping and, especially, to John.