Nystagmus Network UK research workshop 2019.

UK Nystagmus Research Workshop

The Nystagmus Network is today hosting the UK Nystagmus Research Workshop 2019 at the School of Optometry and Vision Sciences, Cardiff University. Delegates are joining us from the 6 UK centres of nystagmus research excellence. These are:

The School of Optometry and Vision Sciences, Cardiff University
The Ulverscroft Eye Unit, University of Leicester
Moorfields Eye Hospital, London
The Royal Eye Infirmary, Plymouth
The Academic Unit of Ophthalmology and Orthoptics, University of Sheffield
The University of Southampton and Southampton General Hospital

All delegates will also be attending the Nystagmus Network Open Day 2019 at the Principality Stadium, Cardiff on Saturday.

Manchester meet up

The next meeting of our new North West nystagmus network will take place on Saturday 7 September in central Manchester, 10am to 12 noon.

Nystagmus Network trustee, Marie Turnbull will once again be your host .

We look forward to welcoming back the families and adults who came along last time and to seeing some new faces, too.

New members are very welcome. For details, please contact us today.

Jeans for nystagmus Genes

Any school can take part in Jeans for Genes Day. Pupils and staff can wear their jeans to school for a day and make a donation to charity.

How to get your school involved

Check they haven’t held a Jeans for Genes Day in the last 3 years.

Ask the headteacher or other member of staff to hold a Jeans for Genes Day in September 2019.

Explain you want them to support the Nystagmus Network on Jeans for Genes Day. That means half the money your school raises will go to the Nystagmus Network and half will support people affected by other genetic disorders in the UK.

Ask the school to register on the Jeans for Genes Day SIGN UP page and choose the Nystagmus Network from the list of partners.

Once the school is all signed up, please let us know so that we can support you and thank the school. 

Your workplace can sign up, too. CLICK HERE FOR DETAILS

Why are we doing this?

We want to use our Jeans for nystagmus Genes money to fund THE NYSTAGMUS NETWORK BIG ADVENTURE. Find out more here about our partnership with Genetic Disorders UK.

Ski with Menna and Jen

With thanks to our friends, the Outspan Rebels VI ski team, we’re offering you the chance, this August, to try out skiing for yourself at Snozone Milton Keynes.

Menna Fitzpatrick MBE and Jennifer Kehoe MBE will be there on 18 August with their medals.

Come and meet them!

Children, young people and adults all welcome. Bring along your fully sighted family members, too.

Please see the poster for full details.

All enquiries, please, to [email protected]

Not sure VI skiing is for you?

Watch this short video clip.

formidAbility

GUEST POST, by Joanne Roughton-Arnold

I am a member of the Nystagmus Network. I have ocular albinism with subsequent congenital nystagmus.

I am a professional opera singer. Inspired by my recent work singing with the British Paraorchestra, I have started a new opera company formidAbility out of a passionate belief that this extraordinary art form can touch so many more people if we better reflect the diversity of our audiences on stage. formidAbility is a healthy mix of disabled and non-disabled artists creating high calibre work, breaking down barriers and challenging perceptions of disability and inclusion in the arts.

We are putting accessibility at the heart of the creative process, giving it artistic value of its own and making it something that enhances the performance for all audiences members. We are all about bringing people together and losing any sense of division between disabled and non-disabled audiences and artists.

We’re thrilled to be bringing our first production to the 2019 Grimeborn Festival at London’s Arcola Theatre, integrating opera with Signdance and the Rationale Method of audio description for the first time. 
Tickets are available here.

Please read our full press release below. The rehearsal photo is of me at work with David Bower of Signdance Collective International. David is a fabulous actor who happens to be deaf – he will be well known to fans of the cult film Four Weddings And A Funeral, from his role as David.

Very best wishes,
Joanne Roughton-Arnold

formidAbility presents Hotspur|Pierrot Lunaire

An exciting inclusion in the 2019 Grimeborn Festival, this double bill of Schoenberg’s Pierrot Lunaire and Gillian Whitehead’s Hotspur promises to be a treat for the senses in more ways than one. Pierrot is the wandering, painted-face clown seeking poetic inspiration in a prism of moonlight and yearning for the beautiful Colombine. Expressionistic and darkly comic with hints of cabaret, Schoenberg’s 1912 iconic melodrama for voice and five instrumentalists is one of the most influential musical works of the twentieth century. In this performance, it will follow a new staging of the dramatic Hotspur, the opera that marked the beginning of a prolific collaboration between revered NZ composer Gillian Whitehead and librettist Fleur Adcock. In contrast to Pierrot’s timeless abstraction, Hotspur tells the tale of the 14th century Northumbrian hero, Henry “Hotspur” Percy, through the eyes of his recently widowed wife. Elizabeth Mortimer, labelled “a most dangerous widow”, featured with her husband in Shakespeare’s Richard II and Henry IV Part I. The performance is produced by formidAbility, a newcomer to the British opera scene, who are breaking new ground in accessibility and inclusion for those with disabilities, both onstage and off. Co-founder Joanne Roughton-Arnold, who also sings in both operas, is already known to London audiences from her work with Opera Holland Park, and her one-woman commission for Grimeborn in 2016, Iris Dreaming. Originally from NZ and with a background as a professional violinist, to label Roughton-Arnold as exciting is an understatement. She single-handedly commissions, produces, fundraises and sings projects of astonishing emotion and vision. With a mass of wild copper curls and an arresting belly laugh, her energy is positively atomic. Her own visual impairment has never curbed her own ambitions and vision as an opera singer and producer, and formidAbility formalises her work into an incorporated non-profit company which puts accessibility at the heart of the creative process, rather than adding it as an afterthought, and collaborates with the world’s foremost artists working for or with disability. For Hotspur/ Pierrot, Roughton-Arnold shares the stage with Signdance Collective International artists Isolte Avila and David Bower (perhaps best known for his role in Four Weddings and a Funeral), and also incorporates imaginative live audio description from leading practitioners Rationale Method, pre-concert touch tours and braille translations for the audience. Sara Brodie, one of New Zealand’s leading directors and choreographers, joins forces with London-based Australian conductor, Scott Wilson, to create this ground-breaking new production. The project is being supported using public funding by the National Lottery through Arts Council England, with additional support from the New Zealand Society and the Webb Family Charitable Trust, and has just launched a crowdfunding campaign for the remaining £15,000. Tickets can be booked via this link.

Howzat?

Nystagmus Network supporter, Phil Morris organised a charity cricket match on Sunday 30th June 2019. The teams were Phil’s own Hendrefoilan Hedgehogs versus an Invitational 11 from a number of other teams around the west of Swansea.

A great game was had by all with a post match BBQ, cake stall and raffle.

Due to the generosity of all a fantastic sum of £900 was raised on the day.

Phil’s son Jac, who has nystagmus, attended and watched the game. Jac loves all kinds of sports and is no stranger to fundraising himself.

THANK YOU Phil and Jac!

Free Open Day places for Cardiff families

The Nystagmus Network has been awarded a small grant by the Millennium Stadium Charitable Trust to sponsor a number of free places at Open Day 2019 for Cardiff families. The event takes place on Saturday 28 September at the Principality Stadium, Cardiff.

If you or someone you know would benefit from attending this event, please ask them to email us at [email protected] or complete the form below.

Thank you.

Community Fund logo

Parent Power comes to Southampton

Parent Power, funded by the National Lottery Community Fund

PLEASE NOTE – BOOKING IS NOW CLOSED

The Nystagmus Network is now inviting parents and carers to attend the first of our Parent Power education workshops.

Location:      Southampton

Date:            Saturday 12 October

Time:            10am to 2pm

Lunch will be provided. This is an adults only event.

The aim of the project is to empower parents and carers with legally based information on how to advocate for their children with nystagmus to ensure they receive appropriate support across all stages of education.

Led by our 2 IPSEA trained education advocates, delegates will learn about the rights of their children under law and receive advice on how to access the range of SEN support available to visually impaired children, including an explanation of the EHC plan process.

The workshops will also cover practical information on exam access arrangements, reading resources and transition plans. Content will be tailored to the age and educational stage of your child.

Following the formal input of the day, local parents and carers will have the opportunity to network with each other and also meet local adults living with nystagmus.

There will be more news about 4 future dates and locations across England very soon.

In celebration of Irene

Today Nystagmus Network’s Sue and Sara are travelling to Leicester University to attend a day of celebrations. We shall be marking 20 years of ophthalmology in Leicester and, in particular, the work of Professor Irene Gottlob.

The programme for the day, at the Ulverscroft Eye Unit, includes a range of presentations on various eye conditions, including, of course, nystagmus.

Dr Helena Lee, University Hospital Southampton, will speak on her trials using oral Levodopa to rescue retinal morphology and visual function in a murine model of human albinism.

Dr Mervin Thomas, University of Leicester, will present on the development and clinical utility of a diagnostic nystagmus gene panel using targeted next-generation sequencing.

Sohaib Rufai, Clinical Fellow at University of Leicester, will explore whether handheld OCT can predict future vision in infantile nystagmus.

Leah Haywood, University of Leicester, will discuss facial recognition in infantile nystagmus.

Dr Frank Proudlock, University of Leicester, will talk on reading in infantile nystagmus.