The Nystagmus Network was delighted to have Rory Cobb with us at Open Day 2017 to lead off the parents’ conference with an informative and inspiring presentation. Rory has a life time’s experience of working in the field of education and supporting children with low vision. Rory was ably assisted by his RNIB colleague, Sue Keil.
Here is their presentation: Rory Cobb presentation
The Nystagmus Network was privileged and proud to be joined at Open Day 2017 on 30 September by representatives from the 6 UK centres of excellence in nystagmus research.
Each team presented news of the latest developments over the past year and highlighted work in progress for the future.
Mr Jay Self BM, FRCOphth, PhD, Associate Professor at Southampton University and Consultant Ophthalmologist at Southampton General Hospital, joined by his colleague, Dr Helena Lee, NIHR Academic Clinical Lecturer in Ophthalmology at the University of Southampton, delivered this presentation.
The Nystagmus Network was privileged and proud to be joined at Open Day 2017 on 30 September by representatives from the 6 UK centres of excellence in nystagmus research.
Each team presented news of the latest developments over the past year and highlighted work in progress for the future.
The Nystagmus Network was privileged and proud to be joined at Open Day 2017 on 30 September by representatives from the 6 UK centres of excellence in nystagmus research.
Each team presented news of the latest developments over the past year and highlighted work in progress for the future.
We were delighted to have John Sanders with us again at Open Day, this time representing the work of Professor Chris Harris, Professor of Neuroscience at Plymouth University. John has been involved with Chris’s work on the Nystagmus Care Pathway project.
Here is John’s report:
Thank you for the opportunity to say a few words about the Nystagmus Care Pathway. I’m standing in for Professor Chris Harris who has done most of the work along with his orthoptist colleagues in Plymouth.
I’d like to explain three things:
1) what the pathway is
2) why it’s a good idea
3) what stage it’s at now.
The Care Pathway is a set of suggestions for hospital staff and other professionals about what to do when a patient has nystagmus. For instance:
The professionals involved will include ophthalmologists, orthoptists and optometrists. An individual pathway may also bring in neurologists, paediatricians, imaging teams, genetic specialists, vision scientists, VI teachers, counsellors, rehab workers and others.
Basically, the Pathway is a set of minimum standards.
The evidence gathered by the Nystagmus Network over decades suggests that, in some cases at least, what happens in eye hospitals isn’t what patients expect, especially in terms of diagnosis, support and information.
That said, we know that some hospitals provide a very good diagnostic and information service. So one aim of the Pathway is to make sure that what the best hospitals do already happens in all hospitals.
This should lead to better outcomes for everyone with nystagmus. By better outcomes we mean things like confidence, happiness, school work and ultimately life chances – as well as treatment where that may help.
So, the Pathway is a good idea because it’s what many of you want.
At the moment, the Care Pathway is only a proposal. We expect that BIOS, the professional body for orthoptists, will publish the proposed Pathway on its website shortly. That should get people in the medical world talking about the Pathway. And hopefully, before long, hospitals will start using it.
In the meantime an early version of the Pathway is available. Please note that the Pathway has been updated and amended since this version was published in 2015.
Conclusion
To sum up, the Pathway should ensure that everyone diagnosed with nystagmus has a minimum standard of care.
Or, to put it another way, we can already do a lot to help people with nystagmus. The Pathway should make sure that everyone gets that help.
The Nystagmus Network was privileged and proud to be joined at Open Day 2017 on 30 September by representatives from the 6 UK centres of excellence in nystagmus research.
Each team presented news of the latest developments over the past year and highlighted work in progress for the future.
Maria Theodorou, Consultant Ophthalmologist at Moorfield’s Eye Hospital, London gave the following presentation:
Delegates at Open Day were also able to sign up for Maria’s latest research study into nystagmus in young children.
The Nystagmus Network was privileged and proud to be joined at Open Day 2017 on 30 September by representatives from the 6 UK centres of excellence in nystagmus research.
Each team presented news of the latest developments over the past year and highlighted work in progress for the future.
Dr Rebecca McLean (PhD), Research Associate, Department of Neuroscience, Psychology and Behaviour, The University of Leicester gave the following presentation alongside her colleague, Frank Proudfoot.
The Nystagmus Network was privileged and proud to be joined at Open Day 2017 on 30 September by representatives from the 6 UK centres of excellence in nystagmus research.
Each team presented news of the latest developments over the past year and highlighted work in progress for the future.
The Nystagmus Network was proud to be granted permission to hold the first public screening anywhere in the world of a brand new short film about nystagmus at our 2017 Open Day in Birmingham on 30 September. Almost 200 members of the nystagmus community were present to watch the film. The film’s creator is a member of the Nystagmus Network.
Internationally acclaimed photographer David Katz shares his story in the film Through My Lenses which describes his journey from being diagnosed as blind at three months old to becoming one of the top sports photographers in the British national press by the time he was 20.
Through the film, David shows how he excelled in his chosen career of over 30 years, working as a highly respected and accomplished photographer for national and international newspapers and media, while keeping the fact that he is legally blind from almost everyone who knew him.
Remarkably, this career at the highest level of international media encompassed not only press photography, notably capturing shots of the British Royal Family including the Queen, and intimate images of celebrities such as Elton John and Amy Winehouse, but two long-term photographic documentaries, three political campaigns, and being chosen to be the personal photographer to a Prime Minister.
David created Through My Lenses in order to show what is possible with the right encouragement, persistence, dedication and commitment, and the spirit that anything is possible. His belief, based on his personal experience, is that there is no such word as ‘can’t’, and for anyone with a disability or impairment who is told that something is not possible, to know that it is.
“I was given my first camera when I was seven years old and have been in love with photography ever since,” he says. “I see things in a different way to other people. As a child I found it difficult to express what I saw through drawing or painting – a camera was the next best thing.”
Until now David hasn’t spoken about his condition as he didn’t want to be treated any differently to anyone else but feels the time has now come to share his story in the hope of helping others.
“There is some fantastic work being done out there, by organisations including the #valuable campaign, headed by Caroline Casey, which calls on businesses to recognise the value of one billion people with disability, and the Nystagmus Network. My hope is that I can add to that work and use my experience, knowledge and understanding to show children and their parents that they can achieve anything they want to. I hope my story proves that.” David Katz, September 2017
The charity is currently recruiting to a new temporary part time or full time post of Information Support Officer.
This opportunity is offered initially to 30 April 2018 pending a review of the Charity’s staffing needs.
Full time hours are 35 per week at an annual salary of £18,000, with 20 days annual leave entitlement. Applications from those wishing to work part time will be considered on a pro rata basis.
Introduction
The Nystagmus Network is the oldest and best recognised charity supporting those affected by nystagmus in the UK. Nystagmus is a complex eye condition that is characterised by involuntary movements of the eyes where they appear to wobble or flicker from side to side or up and down. The charity offers support and information to the 1 in 500 people who are affected by nystagmus, whilst also leading the research into the condition to find a potential treatment.
Job Purpose
The purpose of the role is to provide back office and administrative support to the operational running of the charity and contribute to business continuity.
Key duties and responsibilities
Person specification
| Essential | Desirable | |
| Qualifications | Full level 2 qualifications, including English and Maths GCSE grade C or above | |
| Experience | Office administration.
|
Work in the charity sector in a support or office role; organising events |
| IT skills | Proficient in the full Microsoft office suite; competence in the use of social media for business purposes | Experience of using WordPress, Presspoint, Mailchimp and Shopify |
| Communication | Demonstrable proficiency in written and verbal skills; a keen eye for detail | Proofreading experience |
| Way of working | A methodical approach, excellent time management and ability to work on your own initiative | |
| Interpersonal | Ability to show empathy, a good listener.
A team player who gets on with people. |
Awareness of the effects of living with or supporting someone with a vision impairment |
Pay and Annual leave
This is a home-working role that pays £18,000 per annum for 35 hours work per week, but can also be done part-time with the appropriate pro-rata pay.
There will be 20 days annual leave (pro-rata for part-time).
Location
Homebased, with appropriate office space. For some meetings, it would be helpful if the jobholder lived within reasonable travel distance of London.
Infrastructure
You will need to have access to High Speed broadband; use of a Windows 10 laptop or pc and a printer.
Length of Appointment
This opportunity is offered initially to 30 April 2018 pending a review of the Charity’s staffing needs.
How to Apply
Apply by sending a CV and a covering letter of not more than two pages explaining how you meet our requirements by email to [email protected]
Applications must be submitted by midnight on Monday 16 October 2017. We expect to make an appointment by 1 November.
A research team at Moorfield’s Eye Hospital in London, headed by Maria Theodourou, is conducting an investigation into how the vision and nystagmus develop in young children.
Until the end of 2017 they are looking to recruit infants and young children (up to 3 years of age) with idiopathic nystagmus to take part. So, provided your child does not have a known cause for their nystagmus, they may be eligible.
The study will involve checking your child’s vision at a Moorfield’s clinic in London, testing for glasses (refraction) and assessing whether your child’s eyes are straight or whether they have a squint. They will also take recordings of your child’s eye movements, using a video camera, while he or she is sitting on your lap watching a large screen. This typically takes 20-30 minutes.
If you are interested in participating, or would like to find out more, please complete the form below. Thank you.
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