Maria Theodorou speaks at a Nystagmus Network event.

Nystagmus research update from London

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:

London – Maria Theodorou

Delegates at Open Day were also able to sign up for Maria’s latest research study into nystagmus in young children.

 

rebecca presents at the Nystagmus Network Open Day

Nystagmus research update from Leicester

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.

Leicester – Rebecca McLean

 

Jon Erichsen speaks with delegates at a Nystagmus Network Open Day event.

Nystagmus research update from Cardiff

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.

Professor Jonathan T. Erichsen, DPhil, Professor of Visual Neuroscience, School of Optometry and Vision Sciences at Cardiff University gave the following presentation:
Meanwhile, Jon’s colleague, Asma Zahidi, a researcher with the School of Optometry and Vision Sciences at Cardiff University, was recruiting to her latest study into Characteristics and Impact in Children with and without Down’s Syndrome. This is a joint project between the Research Unit for Nystagmus (RUN) and  the Down’s Syndrome Vision Research Unit.
Delegates at Open Day were able to sign up to take part in the study and also try the eye-tracker machine which Asma had kindly brought along.

World Film Première – Through my Lenses

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

Nystagmus Network Research Strategy 2017-19

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:

  • Reporting – every three months during the life cycle of a project
  • Publication – within 12 months of the completion of a project
  • Open Day – researchers must attend and present their work at the Nystagmus Network Open Day (through a poster session)

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.

Funding plan

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.

Project workflow

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.

Area of research – quality of life

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:

  • Adults with acquired nystagmuswhat impact has nystagmus had on existing relationships?
  • Children with congenital nystagmuswhat is the social impact of nystagmus in a small social setting?
  • Children with acquired nystagmusdoes acquired nystagmus have a detrimental impact on a child’s ability to learn?
  • Parentshow do parents perceive their child’s nystagmus?
  • Siblingsdoes nystagmus impact their sibling’s quality of life?
  • General nystagmus subjectdoes one type of nystagmus (congenital) have a greater impact on quality of life than another?

The subjects above are suggestions for small scale research projects which could provide interesting insights.

Merry Christmas everyone!

Merry Christmas everyone!

It’s been a very busy year at the Nystagmus Network with lots taking place! Our Chairman Richard has a short Christmas message he would like to share with you all – please click on the image below or the link here to watch it.

Thank you for our support in 2016!

Finally, we would like to say a big thank you to everyone who has supported the charity in 2016. We have big plans for next year which we hope will make a massive impact on everyone in our community!

Have a great day and a very Merry Christmas from everyone at the Nystagmus Network!

Steve McKay announcement

It is with great sadness that we announce the sudden and unexpected death of Trustee Steve McKay from Newton Abbot in Devon.  Steve suffered a tragic road accident on Thursday 1 December which rendered him unconscious and he never recovered, passing away on Sunday 4 December.  Steve has been a highly-valued Trustee with the Nystagmus Network since 2009 and was responsible for our public relations and social media engagement.

He has made a huge contribution to the charity with his commitment and dedication and his seemingly boundless enthusiasm. At many of our Open Days Steve would astound everyone with his stories of daring escapades in the west country, including driving tractors and having a good go at a range of sports. He was a role model in never letting nystagmus hold him back.  Most importantly for the nystagmus community, it was Steve who came up with the notion of “Wobbly Wednesday” and who saw the potential of an annual awareness day for nystagmus that mixed serious messaging with a strong element of fun and celebration.  He recently shared a video blog with everyone about his love of photography – another of his many talents.

The Trustees and staff of the Nystagmus Network and everyone in the wider nystagmus community will miss Steve very much and our thoughts are with his family at this time.  His inspiration and zest for life and his determination not to let his visual impairment get in his way will live on, especially as Wobbly Wednesday continues to grow year-on-year. Below is a short tribute video to Steve.

Steve’s funeral will be held on Wednesday 21st December at 11.15 at All Saints Church, Highweek, Newton Abbot, followed by refreshments at the Highweek Inn. Family flowers only with donations going to the Nystagmus Network, either by sending a cheque payable to “The Nystagmus Network” to Zealleys, Funeral Directors of 17 Devon Square, Newton Abbot, Devon. TQ12 2HR, or direct via our Just Giving page here.

Peterborough Community Radio interview

This week the video blog at the Nystagmus Network features our very own Sue!

The video is her interview with Peterborough Community Radio which is hosted by one of our very loyal and long standing supporters Tim Heywood. Sue and Tim discuss the Nystagmus Network, nystagmus and Wobbly Wednesday.

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