Tag: nystagmus

Sponsors sought for Open Day 2018

The biggest nystagmus event of the year takes place on Saturday, 29 September in Birmingham. This is our annual Open Day, where 200 nystagmus families get together to talk about research, education, support, assistive technology, mobility, education and general day to day living with a visual impairment. The Nystagmus Network is seeking sponsorship from commercial organisations. If you’re interested and would like to find out more, please contact us today.

Priority booking for free tickets to charity members opens at 12:00 on Thursday, 28 June, with any remaining tickets going on general sale from 26 July.

Fight for Sight partners with the Nystagmus Network for its next grant round

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

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

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.”

Find out more here.

Sue attends APPG meeting on eye research

Sue attended a meeting yesterday at the House of Commons of the All Party Parliamentary Group for Eye Health and Visual Impairment. The subject of the meeting was eye research. Sue was the guest of Fight for Sight, whose Chief Executive, Michele Acton, gave a powerful account of the current sight research position and admirably represented the voice of both  patient groups and research teams. The meeting was chaired by Lord Low of Dalston, who is himself visually impaired. Other speakers were Red Szell, who spoke evocatively of his own experience of gradual sight loss due to retinitis pigmentosa; Dr Ian Churcher, Vice President of Drug Discovery at Benevolent AI, who explained the use of artificial intelligence to push the boundaries of treatments for different eye conditions; Rachael Pearson, Professor of Developmental Neuroscience at University College, London who gave an overview of eye research and, in particular, the importance of basic research and Dr Elizabeth Robertson, Director of Research Diabetes UK, who outlined how charities are collaborating to solve large scale clinical issues.
Although there is no doubt still a way to go to achieve the government investment needed to challenge preventable sight loss, Sue was encouraged by what was said at the meeting.
She 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.
A child swimming underwater.

How amazing are you?

Have you done something amazing, something you never thought possible, because you have nystagmus?
Has your child exceeded all your expectations?
If so, we want to hear from you.
Last year we heard about the fantastic swimming and fundraising achievements of Annabelle, Tyler and Poppy. This year we want to hear your stories.
Between now and 20 June, Nystagmus Awareness Day, we’re collecting all those lovely stories of adults and children who’ve achieved great things despite having nystagmus, or maybe even because they do.
We’ll feature all the best stories right here on our blog and on our Facebook page, so everyone can celebrate with us your amazing nystagmus successes.
If you’d like to help us to support everyone with nystagmus to be amazing, please text ZING18 £5 to 70070. Thank you.
Please complete the form to let us know about your amazing nystagmus success story.

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.

Children sit around a mat interacting with their teacher.

Nystagmus Awareness Day – for schools

Schools can take part in Nystagmus Awareness Day, especially if there is a pupil who has nystagmus. Talking about nystagmus, celebrating ‘nystagmus in the open‘ will help us raise awareness of the condition and help the children affected explain it to their friends. This can help remove the sense of isolation some children feel. We have a free to download PowerPoint presentation, perfect for assemblies and form time, a Lesson Plan and our special booklet for children, Wobbly Eyes. If you would like some balloons, please contact us.

If you would like to help us fundraise on the day, with a bake sale, fun sports or non-uniform day, you can publicise your ‘nystagmus in the open‘ event with one of our free flyers. There is even a template, so that the children can make their own bunting. They are all free to download.

Thank you for your support, from everyone in the nystagmus community.

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

Nystagmus Awareness Day – for sports clubs

Calling all sports and athletics clubs – we want you to join us for ‘nystagmus in the open‘ on national and international Nystagmus Awareness Day on Wednesday 20 June. We need you to help us prove that children and adults with nystagmus can take part in sport and fitness, despite their visual impairment. So please organise a fun sports day or a try out session at your local club or recreation ground and invite everyone to come along. We have free flyers to help you publicise your event. There is even a free bunting template. But if you would like some balloons, you will need to contact us, please.

Last year, with the ‘nystagmus big swim’, we proved that people with nystagmus can be amazing swimmers. Our nystagmus water babies also helped us raise a lot of money through sponsorship. You can help us achieve the same success this year.

Thank you for your support.

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

Nystagmus Awareness Day – for snow men!

Whilst we are all looking forward to the very first Nystagmus Awareness Day in the summer – on Wednesday 20 June – for those of you who miss the old days, when Nystagmus Awareness Day was celebrated in November, you can get this year’s ‘Wobbly Week’ off to a great start by coming sledging or skiing with us at the Snow Dome, Milton Keynes.

Jamie Fuller, from the Outspan Rebels VI ski team, is organising the first of two amazing Nystagmus Network Snow Camps. It takes place on Sunday 17 June.

There will be skiing and sledging for adults and children with nystagmus, their fully sighted parents, siblings and friends. Everyone is welcome to come along. Each session costs just £10 per person.

Charlotte Evans MBE will be there on the day along with Jamie and the Outspan Rebels, themselves. There might even be a few very special visitors!

It is sure to be a great day. So please join us if you can. To register your interest, please contact us.

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

Nystagmus in the garden

To mark the end of Wobbly Week 2018, Sue will be opening her tiny courtyard garden in Lincolnshire to the public for ‘nystagmus in the open‘. There will be tea and cakes, a book stall, craft table, bric-a-brac and plants for sale – and lots of Nystagmus Network bunting!

Sue and her husband have been members of the charity since their daughter was diagnosed with nystagmus in 1991, during the first few weeks of her life. Sue has served as a trustee, volunteer parent adviser and is now an employee.

If you can’t make it to Sue’s garden, please consider making a donation to her Justgiving page instead. Thank you.

If, like Sue, you would like to open your garden for Nystagmus Awareness Day, you can download a free poster or flyer. For more details about this ‘nystagmus in the open‘ event or for advice on how to organise your event, please call Sue on the charity information and support line: 01427 718093.

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