The Nystagmus Network is delighted and proud to announce that our charity Chairman, Richard Wilson, has received an OBE in Her Majesty the Queen’s New Year’s Honours list today.
Richard says:
“This award is primarily for my work as a Civil Servant for the past 36 years, but undoubtedly it also reflects my time as a Trustee and Chairman of the Nystagmus Network. I am hugely humbled and proud to have been recognised in this way.”
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
One of the main goals at the Nystagmus Network is to encourage research with a view to finding treatments, a cure and to improve the everyday lives of those with nystagmus. In order to meet this goal, the charity has created a Research Strategy which will enable the Nystagmus Network to plan its involvement with the research community.
With a clear strategy, the charity will be able to identify a subject(s) which it wishes to focus on within a defined lifetime cycle. This consolidated approach has the potential to lead to quicker gains and developments in the chosen subject rather than adopting a broader funding approach.
As part of the Nystagmus Network’s research goal is based on improving the everyday lives of those with nystagmus, it has led the charity’s research committee identifying “Quality of Life” as a subject it wishes to focus on over the next three years (2017-19).
By adopting a more specific funding approach the charity will be able to see clear progress in the work it funds. It is expected that within a defined time period the charity would see developments which has or could lead to change in the research subject selected. This would meet the charity’s overall goal of driving forward the research into nystagmus in each research cycle.
The Nystagmus Network Research Strategy will be set for a three-year cycle where all the research funded relates to one specific subject. Once the three-year cycle is over the charity will change its focus to another research subject as agreed by the Nystagmus Network research committee.
As part of the Research Strategy the charity will have a pre-defined set of deliverables which is expected from all its research projects. This would start with how the charity expects its funding applications to be completed to how quickly it expects any results to be submitted for publication. Some examples of these would be:
Although the Research Strategy is set for a three-year period, the charity will review it on an annual basis annually to ensure it continues to meet the charity’s overall research aim.
To have a three-year funding plan it is important to identify how often the charity plans to fund projects during this period. The charity wants to ensure that it funds enough projects which will have a dramatic impact on the nystagmus community without over saturating the research into the chosen research subject.
The research strategy will be based on a two-pronged approach in terms of funding. The first approach will be through a small grants scheme where the charity will provide funding for a maximum of three small research projects based on the charity’s research subject per year. These projects would be small in their scale and cost to the Nystagmus Network and there will be deadlines of final reports due within 3 months of their completion. As part of the grant agreement, all researchers would be required to attend and present their work at the Open Day. Funding for these projects will be from the charity’s general funds that form part of the yearly budget and would range from £1,000 to £2,000 per project. However, this overall funding amount is subject to change.
The second approach will be to apply to external funders in conjunction with a research team for a large scale project based on the charity’s chosen research subject. This project would last for a three-year period and clear reporting deadlines will be set so that updates can be communicated with the nystagmus community. This large project will not form part of a financial guarantee of the charity’s research commitment, but it will reflect its intention to work with the research teams to secure larger scale funding.
To find each short study the charity will either put a call out for proposals or will contact a research team about a project idea. The charity plans to work 6 months – 1 year in advance so that it can ensure the projects start on time. By taking this approach it will mean there is no delay in the charity providing funding as there will always be projects lined up in advance for it to fund. As the funding is coming from the charity’s general funds there should be no break in providing funding on a yearly basis. The long term study will involve a more rigours process. The charity plans to have a project idea and proposal from a research team at least a year in advance so that the funding can be investigated. It may take a few months to apply and secure the financial commitment from an external source so it needs to be completed well in advance of the project start date.
To enable the charity to focus its research funding between 2017-19 the Nystagmus Network research committee has agreed to focus on the subject of “quality of life for those with nystagmus”. The charity plans to look deeper into this subject whilst also “piggy backing” on any current or upcoming research into this area. This could include joint funding awards with other charities or supporting existing projects with additional funding.
What is important is that the charity encourages research into this area which covers all aspects of nystagmus. Some suggested research topics are:
The subjects above are suggestions for small scale research projects which could provide interesting insights.
