Category: Open Day 2019

Daniel’s a man on a mission

Man on a Mission with Low Vision, visually impaired entrepreneur Daniel Williams is working to raise awareness of the value to business of meeting the needs of visually impaired customers and employees.

Founder of Visualise Training, Daniel is working hard to convince the business world one company at a time.

Members of the Nystagmus Network will have the opportunity to meet Daniel at Open Day 2019 in Cardiff and hear him speak about his career, his passion for the rights of everyone with low vision, and living with sight loss himself.

Read Daniel’s latest article ‘The Business Case for Low Vision’, published by Visionary, here.

Nystagmus Network research conference 2019.

Nystagmus research conference 2019

The Nystagmus Network will once again be hosting a UK nystagmus research conference in 2019.

Following the success of last year’s event, attended by research and clinical teams from the Universities of Cardiff, Sheffield, Plymouth and Southampton and from Moorfields Eye Hospital and Fight for Sight, the charity will be funding a further event with a view to bringing about ever closer collaboration between teams and seeking out new and collaborative ways to make rare resources stretch even further.

As testing and detection become ever more sophisticated, it is hoped that outcomes for babies born with nystagmus will continue to improve, with effective treatments, prevention and even cure moving closer. In addition, therapies and interventions for young people and adults with congenital and acquired nystagmus continue to be explored.

This year’s conference takes place at the University of Cardiff in September. Delegates from across the UK have been invited and the charity is delighted to announce that representation from Leicester, London, Plymouth, Southampton and, of course, Cardiff is already confirmed. Clinicians, researchers and academics will be joined by Research Manager at Fight for Sight, Neil Meemaduma and those Nystagmus Network trustees who sit on the charity’s research committee.

Research teams will also attend the Nystagmus Network Open Day in Cardiff on Saturday 28 September, where they will be available to speak with delegates about their work.

Research into albinism could be good news for babies born with nystagmus

Dr Helena Lee from the University of Southampton was happy to announce this week the publication of a first paper from the OLIVIA study which shows the potential for L-DOPA treatment to improve the vision in albinism.

This means that the sight of newborn babies with ocular albinism could potentially continue to develop and improve with treatment.

Delegates at the Nystagmus Network Open Day later this year will hear first hand from Helena on the progress of her work with L-DOPA.

Meanwhile, you can read the article in full, here.

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.

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

Can I tell you about nystagmus?

The Nystagmus Network is delighted to share news of the launch today of a brand new book about nystagmus.

Written by Nadine Neckles, the book looks at nystagmus from a child’s point of view and provides insights for parents and professionals alike.

Nadine is a friend of the Nystagmus Network and previously contributed an article about her daughter’s nystagmus for our fortnightly newsletter, Focus, in June 2017. Read her article in full by clicking here.

Since then she has continued to parent her daughter, who also has Chromosome 18q-, whilst writing her blog, Caring in the Chaos.

Meet Nadine at Open Day

Nadine will be joining us at Open Day 2019 on Saturday 28 September. Delegates will have an opportunity to meet her and chat with her about bringing up a child with nystagmus and purchase a copy of the book, signed by the author.

Nystagmus Network endorsement

The Nystagmus Network’s Sue Ricketts has provided an endorsement for the book:

“Can I tell you about Nystagmus … highlights a much misunderstood condition. Seen from the family’s perspective, the description of the way nystagmus affects the daily life of a young child will be informative and reassuring for other parents.”

Order your copy today

The book is available to order directly from the publishers. Please click here for details.

Special offer for members

Members of the Nystagmus Network can purchase the book at a generous 25% discount. Please use the voucher code in your special member email.

Free copies giveaway

The first THREE new members to sign up today will receive a copy of the new book ABSOLUTELY FREE as part of their membership package.

Sign up for membership here.