Open Day 2019 – the highlights

Over 200 people gathered together on Saturday 28 September at the spectacular Principality Stadium, Cardiff for the Nystagmus Network Open Day 2019.

To the strains of Sospan Fach, by Cerys Matthews, Chairman of the Nystagmus Network, Richard Wilson OBE took to the stage to welcome everyone.

Up next, Nystagmus Network Founder and Honorary President, Vivien Jones, introduced lead researchers from Cardiff, Leicester, London, Plymouth, Sheffield and Southampton.

Elsewhere in the stadium, the children were enjoying the first drama workshop of the day, courtesy of UCAN Productions.

Next to take to the stage was Daniel Williams, Founder of Visualise Training and Consultancy and our keynote speaker for the day. Daniel shared his own sight loss story and reinforced the message that, with the right support in place, children and young people with impaired vision can achieve their goals.

There was a strong emphasis on education and, in particular, SEN support for children with nystagmus today in Cardiff.

Next to the stage were Nystagmus Network trustees and volunteer education advocates, Frances Lilley and Claire Brinn.

Following close on their heels was Michael Charles from Sinclairs Law, Cardiff. Mike and his colleague, Kevin, were there to provide information and advice for those families whose children attend schools in Wales, where SEN legislation is slightly different from that which applies to English schools.

Later, parents and carers had the opportunity to attend surgeries, drop ins and Q+A sessions with our legal experts.

Gwyn McCormack is the Founder of Positive Eye, an award winning teacher training provider, working to support children with special educational needs and impaired vision.

Gwyn introduced us to her character, Marvin and showed parents how to support their children’s learning and development using simple, everyday objects and tasks.

Elsewhere, Hannah-Elisabeth Ricketts ran a workshop on nystagmus in the workplace.

At lunch time Dr Gareth Rees from DVLA answered delegates’ questions about nystagmus and driving.

Researchers and clinicians were inundated with visitors to the Research HUB.

Our visitors also enjoyed the exhibition, which included suppliers of assistive technology, VI charities, the colleges and a beautiful selection of paintings by Neill Mison the ‘visually impaired artist’ who was there to chat with families about his art.

Parents were networking and getting down to their most burning questions in our Parents’ Forum with mother and daughter team, Jules and Hannah.

Meanwhile, Sara was busy in the Nystagmus Network charity shop selling T-shirts, mascots, raffle tickets and Christmas cards.

Nadine Neckles, author of this year’s fabulous new book “Can I tell you about Nystagmus?” joined us next. Nadine told us all about her book and her experiences of parenting a young child with nystagmus.

At tea time she signed copies of her book.

You can buy your copy, here.

We heard from our speakers in the afternoon about all the services available across the UK for people living with impaired vision and those supporting someone who has a vision impairment.

Representatives of all of these services were part of our exhibition.

Meanwhile, the children are enjoying a second drama workshop or taking part in a team-building exercise with VI rugby ace, Wil Maudsley. Wil was joined by surprise guest and total rugby fan, Adam Hills.

We may not be celebrating the 25th anniversary of our friendship quite yet, but, to the tune of “I’ll be there for you” by the Rembrandts we welcomed to the lectern two of the Nystagmus Network’s very best friends, Joanne Green, Head of Events and Fundraising at Moorfields Eye Charity and Rubina Ahmed, Head of Research at Fight for Sight.

Jo celebrated the amazing achievements of our abseilers and eye to eye walkers who have together raised very nearly £20,000 towards nystagmus research at Moorfields Eye Hospital and University College, London.

Rubina told delegates about our joint funding, to the tune of £250,000 over the next 3 years, of a brand new post-doctoral research project in nystagmus and other joint investment projects to come.

Young Oliver Mitchell welcomed us back into the Millennium Lounge with his rendition of “Danny Boy” in a respectful nod to our charity patron, Sir James Galway. Well done, Oliver!

And finally, we welcomed to the stage singer/songwriter, Ben Haynes. Ben knows only too well what it’s like growing up with nystagmus and albinism, but it hasn’t stopped him from pursuing a career in music. He generously shared his story and some of his music. You can hear Ben’s latest single, here.

Thank you to everyone who made the Nystagmus Network Open Day 2019 such a success and thank you to each and everyone who said yes to Cardiff.

We’ll be doing it all again next year on Saturday 3 October. The location and venue are still to be decided but you can put the date in your diary NOW!

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.

Please vote for Ben

Ben Haynes is a talented young musician who just happens to have albinism and nystagmus. Ben has entered a music competition and needs your vote. We’ll let Ben explain …

Hi everyone. I’m a self employed musician from Nottingham with Albinism and Nystagmus. I performed a few songs at the Nystagmus Network Open day in Newcastle back in 2015.

I was hoping to ask you all a favour …

So I’m in this competition called Future Sound of Nottingham. I’m one of twelve semi-finalists. The winner gets to play Rock City (iconic venue) and then potentially, Splendour festival. Splendour is one of the biggest events in Nottingham. Here’s a link to the song I submitted.

In fear of sounding like a politician, do I have your vote??


You will be asked to provide both your email and mobile number. This is to ensure people don’t vote multiple times.

Once you’ve voted, please share with friends and family. Tagging people on social media is a great way to spread the word.

Thank you for your support X