Applications are now invited for a PhD Studentship to undertake clinical research to address visual impairment associated with nystagmus, focusing on quality of life or causes (including genetic), diagnostic testing / analysis or treatments.
The award is jointly funded by the Nystagmus Network and Fight for Sight.
Please sponsor Adam. He’s standing by to run the postponed London Marathon for the Nystagmus Network, as soon as restrictions are lifted.
Adam is running the London Marathon this year, for his daughter, Florence and for all of us.
Adam says: “I am honoured to be running the 2020 London Marathon on behalf of the Nystagmus Network.
‘My little Florence was born with Congenital Nystagmus … As it stands, there is no cure and so it’s likely that this condition will affect Florence’s vision her whole life. It’s unclear by how much or how little, only time will tell.. but for now, Florence hasn’t let it get in her way! Every day, both she and her twin brother amaze us.
‘I hope by running the Marathon on behalf of this charity, I can not only raise awareness of Nystagmus but raise some vital funds, helping the continued research, information and support for families like us.”
Please consider donating your weekly commute, coffee bill or the price of a night out to show Adam your love and support.
THANK YOU!
An update of our post doctoral award
For those of you eagerly awaiting news, alongside charity trustees, of the outcome of 2019/2020 applications for the new post doctoral research project into nystagmus, jointly funded by the Nystagmus Network and Fight for Sight, we can now share with you the somewhat disappointing news that the project grant will not be awarded this year.
Research priorities
Sadly, although the applications received were strong and very much in line with research priorities laid out by the charity on behalf of the nystagmus community, the expert members of Fight for Sight’s Grant Assessment Panel found that no application met the stringent success criteria required in this very competitive research arena. A post doctoral award is highly prestigious and offered on a fully peer reviewed basis.
Next steps
For the charity this was initially seen as a setback, but it also serves to highlight our faith in Fight for Sight to carry out due diligence on our behalf and the importance of wise investment in robust research projects which are most likely to yield tangible benefits for those living with nystagmus.
Two new research grants
In consultation with our funding partners, Fight for Sight, the Nystagmus Network has now decided to repurpose the hard won monies already committed to the post doctoral project into funding one post-graduate researcher to address visual impairment associated with nystagmus (a new PhD studentship) and, in addition, to provide a further grant award for a clinical research study focusing on quality of life and one or more of the following: cause (including genetics), diagnostic testing/analysis and treatments.
Funding future research
It is very positive news for the future of research for the Nystagmus Network to be funding PhDs, as it establishes a pipeline of work leading to breakthroughs into treatments for nystagmus.
New time scales
Following a rigorous application process, again overseen by experts at Fight for Sight, we expect to award our PhD nystagmus studentship in March 2021. The additional small grant will be awarded in September/October 2020 or March 2021.
Nystagmus Network Honorary President and chair of the charity’s research subcommittee, Vivien Jones, said:
“Through the new nystagmus PhD studentship we shall be bringing new brain power at a significant level to the nystagmus research table. We are also delighted to be continuing the small grant scheme which is an effective way of supporting research projects.”
You can help us keep investing in nystagmus research by donating to our research fund.
THANK YOU.
Can you believe that it’s THREE MONTHS TODAY since Mike set off on his crazy ‘wiggly walk’ the entire length of New Zealand to raise money for nystagmus research?
And he’s still walking!
In case you haven’t been following his progress that closely, he’s currently in the Auckland area and it’s all got a bit wet.
The above picture shows Mike in his pristine Nystagmus Network T shirt preparing to set off on his Walk for Wiggly Eyes.
The picture below, well, sorry, we have no words …
A huge thank you to all our #easyfundraising shoppers for your support.
Together, you’ve helped us raise £65.40 in February simply by shopping through easyfundraising.
Thank you so much!
Vision UK is the independent partnership organisation which works for the benefit of blind and partially sighted people, their communities and the general population, including those at risk of sight loss. They work with national and regional organisations in the eye health and sight loss sector, and beyond.
Vision UK hopes that 2020 will be a big year for eye health and sight loss and would like to make it the “Year of Vision”.
They have put together five objectives for Vision UK members and associates to sign up to:
1) Together we will raise awareness of the need for medical research to encourage investment in eye health.
2) Together we will promote better eye health to prevent sight loss.
3) Together we will advocate for improved eye care and the best possible support for children and adults living with vision impairment.
4) Together we will celebrate those having a positive impact on people’s vision and daily lives.
5) Together we will work towards equality for people who are blind or partially sighted.
Matt Broom, CEO of Vision UK said: “It’s great to have the Nystagmus Network on board.”
What Charity asked the Nystagmus Network for tips on how a small charity can make a big impact.
The Nystagmus Network was founded in the early 1980s, by Vivien Jones, a young mum with a baby boy called Sam who was diagnosed with nystagmus when he was 3 months old. Vivien found a complete lack of information available for parents of a child with nystagmus. Today, we all take advantage of having immediate answers to questions via the internet, but back in 1983 there was no Google. Although there were umbrella charities which supported the visually impaired, such as the RNIB, even they had little or no information on nystagmus.
Vivien had to undertake her own research and identified that the London Refraction Hospital, now the Institute of Optometry, was taking a lot of interest in nystagmus. She got an appointment. Meeting other families and adults with nystagmus, it became clear there was a need for a group which provided information to families, offered support and gave them the opportunity to meet. The Nystagmus Network was born. Its first meeting was held in 1984 and it quickly achieved media coverage which led to people from around the UK wanting to join. Letters began to pour in. Vivien remembers sitting up late into the night answering them and creeping out into the darkness to post the replies at the post box on the corner of her road. There was a huge unmet need for support, and membership rapidly grew. The group also started to produce leaflets, including a guide for adults with nystagmus and a school form for parents to give to teachers who had a child with nystagmus in their class.
The charity has achieved great things in the last thirty years. It hosts an annual Open Day which brings together the nystagmus community (both families and researchers) and this has grown from a few families to over 200 people attending the Open day in 2019. The Nystagmus Network also plays a prominent role in research into the condition and hosted the first International Research Meeting into nystagmus in 2005. Since then, there have been 3 subsequent meetings and an annual UK workshop, which have seen breakthroughs in understanding the condition and potential treatments for nystagmus. The charity also set up national and international Nystagmus Awareness Day in 2013. The day, celebrated on 20 June, has raised thousands of pounds and put the word nystagmus and the condition on the map.
Nystagmus is not a rare condition, but until someone they know is born with it or they acquire it themselves, people have usually never heard of it before. The Nystagmus Network is the biggest European patient group for nystagmus. We are a small charity, supporting the 1 in 1,000 people at least living with nystagmus. We are a membership organisation and represent the voice of our members at every opportunity, working alongside teaching professionals, clinicians and research teams as well as supporting parents of newly diagnosed infants, who still need that same support Vivien was looking for, but could not find all those years ago.
Starting a charity takes a lot of hard work and dedication. It is never going to be easy, but, if your heart is in it, you will succeed. As founder, Vivien is still very much involved with the work of the charity today. She serves as Honorary President and heads up the charity’s research sub-committee. Her son, Sam, is a charity trustee and in recent years has run the London Marathon to raise vital funding for more research. The charity is built on the dedication of one woman who inspires loyalty, respect, purpose and ambition in the charity’s volunteers and small staff team.
We are delighted to announce that Professor Alison Leary MBE has joined the Nystagmus Network as a trustee.
After spending 10 years in science Prof. Leary undertook an RN diploma at The Nightingale School at St Thomas Hospital (now Kings College London). She attained a Masters in Biomedical Science (Haematology) and worked in acute Haematology services. Prof. Leary obtained a PhD in Clinical Medicine from the University of London (Royal Free & University College School of Medicine).
In recent years she has undertaken various projects around the modelling of complex systems in both the public and private sector and has a particular interest in the work of specialist practice and its value. She undertakes research in this area. She also provides a service as an expert witness.
Prof. Leary writes regularly for the general, trade and academic press. She is the clinical lead for the matchday medical service at Millwall FC. In 2015 she was made a Fellow of the Royal College of Nursing and in 2016 a Fellow of the Queen Nursing Institute and a Winston Churchill Fellow for which she examined high reliability organisations looking at safety. She has worked in league football for over 20 years and in 2019 received an MBE for modelling spectator safety.
The Nystagmus Network has appointed Daniel Williams, sight loss campaigner and founder of Visualise Training and Consultancy, to its committee of Trustees.
Chair of the charity’s trustees, Tim Cuddeford said: “We are delighted to welcome Daniel to the committee as he brings a comprehensive overview of the sight loss and optical sectors and first-hand knowledge of the challenges living with a visual impairment can bring. As a well-connected young entrepreneur with a strong social media presence, he will also help us to raise the profile of the Nystagmus Network and the support services we offer.”
Daniel said: “I feel honoured to be part of a small charity that has the potential to support so many people with nystagmus. My younger brother was diagnosed with the condition at the age of one and, as an advocate for the sight loss sector, this appointment will help towards my aim of making the world more inclusive for people with visual impairments through increased opportunities and personal development.”
To find out more about Daniel’s visual impairment training and consultancy services, please visit Visualise Training and Consultancy.
This festive season the Nystagmus Network is celebrating the children and adults with nystagmus who fill the lives of their families and friends with twinkling light, love and laughter.
We’re asking you to tell us about your nystagmus stars – the adults and children who fill your life with light and make you proud of their achievements all year round.
To have your nystagmus star featured at the top of our Facebook page this December, please send us a photo, their first name and why you think they’re a nystagmus star.
Thank you
