Nystagmus Network logo.

Our New Year resolutions

… and our promises to you, the nystagmus community

Thanks to your support and generosity throughout 2019, the Nystagmus Network can confidently resolve and promise that in 2020 we will

ONE – provide even more support and information for everyone living with CN or AN, their friends and family and the people helping them to reach their potential and enjoy a better quality of life

TWO – raise even more awareness of this complex condition to bring about a better understanding of its affects and how schools, employers, companies and organisations can all help people living with nystagmus

THREE – foster and fund even more research into genetics, diagnostic testing and potential therapies so that nystagmus symptoms are better managed, outcomes improved and we can all hope for prevention and even a cure in the future

parkrun for Nystagmus Awareness Day

This year for Nystagmus Awareness Day and ‘wobbly week’ the Nystagmus Network is encouraging everyone to take part in parkrun, to get out into your local park and walk or run for nystagmus awareness.

You can take part in parkrun just about anywhere in the country, every week of the year. But what better way to raise awareness of nystagmus than to do your parkrun during Wobbly Week?

On Saturday 22 June you can take part in a full parkrun. That’s 5k

CLICK HERE to find your parkrun

On Sunday 23 June children 4-14 years and their families can take part in junior parkrun. That’s 2k

CLICK HERE to find your junior parkrun

parkrun is fully accessible to people with vision impairment.

Nystagmus question on Fifteen to One

If you happened to be watching popular Channel 4 TV quiz show, Fifteen to One on Wednesday 19th December and were paying very close attention you will have heard a question about nystagmus.

Quiz master, Sandi Toksvig asked “Which sensory organs are affected by the medical condition nystagmus?”

The contestant clearly knew his stuff as he replied immediately “the eyes”. He earned himself a point and gained a name check for nystagmus on national TV.

Brilliant for nystagmus awareness! Thank you Channel 4.

Watch the episode here.

Seeing Beyond The Eyes

The Nystagmus Network is pleased to share this guest post from our friends at Visualise Training and Consultancy. The new guide ‘Seeing Beyond The Eyes’ includes details of the charity’s services and our contact details so that patients with nystagmus can find us easily for information and support.

Eye care and Health Professionals armed with information to improve lives of patients with sight loss

A free resource pack for eye care and health professionals containing valuable information on sight loss support services, charities, equipment and referral pathways has been produced by Visualise Training and Consultancy  with the support of Thomas Pocklington Trust.

The pack complements the ‘Seeing Beyond the Eyes’ CET workshops  currently touring the UK which raise awareness of the difficulties faced by patients diagnosed with irreversible sight loss. It contains valuable information on local sight loss charities, Eye Care Liaison Officers (ECLO),Vision Rehabilitation Workers, low vision assessment services and Habilitation Workers. It also lists national organisations supporting people with sight loss and condition specific charities. Daniel Williams of Visualise said “It is vital patients with sight loss are referred immediately to sight loss services that can enable their independence and help them deal with a difficult time in their life. However Optical professionals can’t refer if they don’t know who they are referring hence why we have created such a resource pack and training roadshow.At the age of 8, I was diagnosed with Retinitis Pigmentosa, a gradual loss of sight, and had consultations with Dispensing Opticians, Optometrists and Ophthalmologists and at no point was I referred to any support services which is why I am so passionate about empowering eye care professionals with the awareness of what is available for people with sight loss to live independent lives”

Links to professional resources are also included such as the Government’s Access to Work grant scheme, an A – Z list of eye conditions and Thomas Pocklington Trust’s guide to designing a home for someone with sight loss.

Charles Segal, Dispensing Optician from D and H Hantman Optometrists said “It was one of the best CET courses, I have attended. “I had no idea that there was such a range of services, it made me fully aware of where we can send people and not just refer to the eye hospital. It was a highly informative meeting where the attendees actually met people who are dealing with or have dealt with people with sight loss,it was the first time I have actually met someone who has Retinitis Pigmentosa. It was moving and inspiring to hear how people with low vision get-on with their lives. The course has given me the confidence to help people who enter my practice and give them advice. The details of suppliers of low vision aids and daily living solutions are also invaluable for people facing sight loss during their transition to a different way of life”.

The pack can be downloaded free of charge by clicking here

For more information on Visualise Training and Consultancy visit their website

How amazing is Freya?

I was born with nystagmus and always struggled at school both in the classroom and in PE. All throughout my education it’s been a continuous trip to the printer to enlarge text books and print outs. Things didn’t really change at college. I was told I had dyslexia which could be linked to the nystagmus, because of the way my brain is seeing the words. I was offered support sessions to look at alternative methods of learning. I then went on to university and this year I am graduating! I have studied law for the past three years and in September will be going on to train as a barrister. I anticipate many challenges due to nystagmus such as mock court situations. Reading facial expressions and looking at evidence may be challenging, but nystagmus won’t stop me.

 

 

You could win £450 for the Nystagmus Network

SMALL CHARITY WEEK begins on Monday 18 June. If the Nystagmus Network is your favourite small charity, why not enter the Facebook, Twitter or Instagram competition to help us win £450?

How to enter:

Take a photo of yourself holding up your Small Charity Week poster that reads:

“I love Nystagmus Network because (and say why you love the charity)”.

Then simply post it to either Twitter, Instagram or the Small Charity Week Facebook page, depending which competition you want to take part in. Make sure you include the #ILoveSmallCharities hashtag when you post your photograph.

Thank you for your support in SMALL CHARITY WEEK!

You can download your poster here.

Nystagmus Network article published

To achieve our objective of raising greater awareness of nystagmus, the charity publishes articles from time to time on different aspects of the condition. The article we submitted for publication most recently is entitled Wobbly Eyes and explains nystagmus in language a young child can understand. The text is adapted from our free to download publication with the same title. Download your copy here.

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.

People stand at a clinic reception holding Nystagmus Network balloons.

Nystagmus Awareness Day – for clinics

Please help us to promote national and international Nystagmus Awareness Day, on Wednesday 20 June, in clinics and hospitals all over the UK and the world.

We have free to download PowerPoint presentations which can be displayed on a screen in reception. We also have a free bunting template.

For those organising a fundraising event, we also have posters – and don’t forget your bunting!

If you would like some leaflets or postcards to take into your eye clinic the next time you visit, or some balloons, please contact us.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.