Wobbly Wednesday 2nd November 2016 – What will you Wobble?

With just four months to go until the biggest day of the nystagmus calendar, Wobbly Wednesday 2016, it’s time to launch our brand new campaign – “What will you Wobble?”

All you have to do is think of something that wobbles – it’s not that tricky.

You could have a wobbly tooth, or you might wobble when you try to walk in high heeled shoes. Then there’s the Millennium Bridge in London. That was pretty wobbly for a while. There are lots of toys that are wobbly. What about your favourite Subbuteo football team or Weebles – they wobble!

Getting involved

So now we’ve got you thinking about the best thing to wobble, the next step is to take a photo or video clip and send it in to us here or upload it to social media with the #wobblywednesday hashtag.

Make a donation and raise awareness

We are asking everyone who takes part in our “What will you Wobble?” campaign to make a donation to the charity and to use the text below when sharing their photo or video clip.

I’m wobbling for #wobblywednesday!
Text NYST77 £5 to 70070 and wobble for #nystagmus!

Win a prize!

As part of the “What will you Wobble?” campaign the charity will choose the best video and photo. The winners will recieve a small prize!

Inspiration?

If you are in need of some inspiration to take part in the “What will you Wobble?” campaign there will be lots of ideas and things to download from the special Wobbly Wednesday page on our website very soon.

We’ll be posting all the best pictures and details of all the best events planned here too, so please keep looking and check if there is something in your area you can join in with.

We look forward to everyone getting involved with Wobbly Wednesday!

A successful open garden event!

Garden lovers had a rare opportunity this weekend to visit the picturesque gardens of a Wiltshire country estate and help people affected by nystagmus.

On Sunday 12th June Fonthill House, near Tisbury, was opened to the public from 12 – 5pm with proceeds from the event going to the Nystagmus Network. The gardens themselves cover approximately 12 acres, comprising both formal gardens and also an extensive woodland garden, which have been redesigned and redeveloped since 2006.

Lord Margadale currently opens the gardens only three times a year for various good causes and decided to open them for the Nystagmus Network because one of his workers (James Kirk) has a young son with nystagmus. Debbie Kirk, wife to James and mum to Ryan, helped organise the event. She was delighted that it was a success and raised over £2,000 for the Nystagmus Network.

We would like to say a big thank you to James, Debbie and Ryan for holding such a successful event! The money they raised will make a big difference to all the work we are doing supporting the nystagmus community and the new projects we have planned. If you would like to hold an event or make a donation to the charity please get in touch with us or visit our Justgiving page here.

Informative, inspiring, emotional and motivating!

Over 170 people travelled to the Hilton Hotel, Reading on Saturday 7 May for the Nystagmus Network’s annual Open Day 2016. Among them were parents, their children, adults with nystagmus, clinical and research experts, exhibitors and speakers, charity trustees and volunteers, the lovely ladies from the Facebook group ‘Wobbly Days for Nystagmus Families’ and two very well behaved dogs! Nystagmus Network Chair, Richard Wilson, kicked off the event with an ice breaker designed to ensure that everyone had the opportunity to meet another parent, adult or child with nystagmus and also the clinicians and medical researchers who joined us at our Open Day.

Keynote speaker Kristina Venning sought to allay the worst fears of parents with newly diagnosed children as she highlighted the successes of her career in the media.

The well attended and ever popular breakout sessions covered such varying aspects as living with a family member who has nystagmus, building a positive relationship with your child’s school, applying for benefits and the world of work.

Nystagmus Network Information and Development Manager, Dan Lewi, seized the chance to launch the charity’s brand new look, with a new website and logo. Both were received to great acclaim and clearly signaled a new direction and a more positive outlook on the future for nystagmus sufferers everywhere. Photos from the event can be found on our Flickr page here.

Training boost for orthoptists

Future generations of orthoptists graduating from Sheffield University will be even better placed to help nystagmus patients thanks to a new £30,000 eye movement recording laboratory. Only two other universities (Liverpool and Glasgow Caledonian) train orthoptists, so Sheffield’s new facility will have big impact on the profession.

Within five years around 250 orthoptists will have trained in the lab, giving them enhanced skills in the diagnosis and management of nystagmus. This means that nystagmus patients in hospitals across the UK – and beyond – will benefit from the new facility. The lab will also help to diagnose patients with nystagmus in both Sheffield Children’s Hospital and the Royal Hallamshire Hospital.

As well as its role in training new orthoptists, the lab will enable orthoptists in Sheffield University to carry out research. They already plan to develop ways of assessing functional vision in children and adults with nystagmus. Sheffield will also investigate the effect of ageing in patients with nystagmus and whether additional visual stimulation could improve the vision of children with nystagmus.

The Nystagmus Network is contributing £10,000 to the new facility, thanks to a donation from the EBM Charitable Trust. Sheffield University and Health Education Yorkshire & Humber are also contributing £10,000 each. The investment confirms the UK as one of the leading countries in the world for nystagmus research. Nystagmus Network is already funding projects in Cardiff, Leicester, Moorfields (London), Plymouth and Southampton.

Separately, Nystagmus Network has awarded a £1,000 grant to Sheffield to develop a standardised nystagmus information pack for hospitals to give to patients, parents and carers. This project came about after a team of orthoptic lecturers and students took part in NN’s Newcastle Open Day in May.

Moorfields asks big questions

Moorfields Eye Hospital in London is looking for answers to two of the big questions in nystagmus. Firstly, what impact does nystagmus have on the developing vision of young children? And secondly, is there an optimal time for intervening with glasses or surgery?

The Moorfields project will study 30 infants with nystagmus and should be completed during 2017. This project is funded by Fight for Sight, the Giles Warman Foundation and the Nystagmus Network.

Moorfields is also benefitting from a separate £550 grant from the Nystagmus Network towards the purchase of diagnostic equipment for a new paediatric nystagmus clinic