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!

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.