Category: Events

Information Day for professionals at QAC

The next ‘Information Day for Professionals’ event at Queen Alexandra College (QAC) is on Tuesday 9th April, 10am – 3pm.

QAC is a national college for people with disabilities located in Birmingham and these events provide the opportunity to meet our staff and students plus discover more about QAC including our 16-25 provision, College enterprises, employment pathways curriculum, supported living, use of assistive technology and much more. 

There is no charge to attend and a free lunch plus refreshments will be provided. Please email [email protected] for a booking form or call
0121 428 5041.

Just say yes to Cardiff!

The Nystagmus Network is delighted to reveal the destination and spectacular venue for this year’s Open Day on Saturday 28 September.

We shall once again be coming to Wales.

Space has been reserved at the iconic Principality Stadium, Cardiff.

Join us in the Millennium Lounge for this year’s inspirational talks and presentations and meet up with adults, parents, children and young people affected by nystagmus over lunch on the Riverside Terrace.

We have secured an incredible line up of keynote speakers, guest presenters, researchers, clinicians, our education advocates and benefits adviser, plus an adviser on driving and nystagmus from the DVLA, to make sure that each and every one of our delegates gets the most out of their day with us.

Our keynote speaker to introduce Open Day is entrepreneur, Daniel Williams. Our headline speaker to round off the day is singer songwriter, Ben Haynes. We shall also be joined by the author of the 2019 children’s book on nystagmus, Nadine Neckles.

Priority booking for members only will open soon.

Space is limited. Any remaining places, after free member places have been allocated, will go on general sale in the run up to Open Day.

Only Ben can make this world right

Vision impaired singer songwriter, Ben Haynes, will be headlining at the Nystagmus Network Open Day 2019 on Saturday 28 September.

Meet Ben. Hear him talk about his early days as a young person with nystagmus, playing drums in the garage until his big break into music.

Ben will also play a live acoustic set for us.

You don’t know Ben? Hear him perform, here.

Priority booking for members only free places to Open Day opens soon. Any remaining tickets will go on general sale in the run up to the event.

Dan Williams crouches beside his guide dog, Zodiac.

Introducing Daniel

Daniel Williams is our keynote speaker at Open Day 2019.

Daniel is the founder of Visualise Training and Consultancy, a company which delivers sight loss awareness to employers.

Daniel, who is gradually losing his own sight due to Retinitis Pigmentosa, says:
“I am passionate about disability rights and making mainstream services accessible to all, enabling people with disabilities to be as independent as possible. I want to facilitate the social change that will eradicate the shameful employment gap between people with disabilities and the wider population, and I believe Visualise represents one important step in that change.”

Meet Daniel at Open Day.

Priority booking for members only free places opens soon. Any remaining tickets will go on general sale in the run up to our event.

Front cover of the book 'Can I tell you about nystagmus?'.

Meet Nadine at Open Day

Author of the 2019 book ‘Can I tell you about Nystagmus?’ will be at the Nystagmus Network Open Day on Saturday 28 September.

Amber, the leading character in Nadine’s book, was inspired by her daughter, who has nystagmus.

At Open Day Nadine will be happy to chat with parents and share experiences of parenting a child with impaired vision.

She will also be signing copies of her book. If you’ve already purchased a copy, bring it along. Or you can buy a copy on the day.

Listen to a special message from Nadine for Nystagmus Awareness Day 2019, here.

Priority booking for free members only places at Open Day opens soon. Any remaining tickets will go on general sale in the run up to the event.

Eye to Eye – you smashed it!

Huge congratulations and thanks to everyone who turned out on a very blustery Sunday morning to walk 4 or 14 miles around the streets of London to raise money for pioneering nystagmus research at Moorfields and UCL.

The final total is still being counted, but we can report that together you have so far raised a massive £7,600 and counting! WELL DONE EVERYONE!

See photos of our fabulous walkers and finishers by clicking here.

Sue attends VIEW 2019

Sue represented the charity once again this year at the annual VIEW conference in Birmingham on 14 and 15 March.

VIEW represents qualified teachers supporting visually children and young people in schools across the UK.

Sue says: “The Nystagmus Network stand was very busy this year and I spoke to lots of newly qualified and trainee teachers as well as their more experienced colleagues. It’s rewarding to hear first hand that our information for teachers is very much appreciated.”

Walk with us!

There’s still time to register to join Team Nystagmus Network to walk Eye to Eye at 11am on Sunday 10th March. You can choose to walk the 4 or 14 mile route.

Team Nystagmus Network sets off at 11am.

Who’s on the team?

Join Ella and Sam, Andy and Heidi, Andrew, Orla, Nikki and Tremaine, Marc, Mila, Carmen, Imma, Becky, Maria and Katie, Trudy and team ‘Oscar’, and not forgetting Frances. So far these wonderful people have already raised a massive £5,000 for nystagmus research at Moorfields and UCL. Please come and join them and help boost their total even higher. Together, we can make a real difference.

Nystagmus Network trustees will be at the starting point to wave you off and will be walking the route with you, too.

Set up your Justgiving page

Click here to join the team today then set up your Justgiving page and link it to the Nystagmus Network to ensure that every penny you raise goes to nystagmus research.

THANK YOU!