research – Page 10 – Nystagmus Network

Fight for Sight survey on eye conditions and sight loss

Fight for Sight needs your help as part of a ground-breaking survey into the experience of living with sight loss or an eye condition. By taking part in the survey you will be helping Fight for Sight to put sight loss on the map and help increase the amount of money going into eye research.

You may not be aware but currently sight loss costs the UK economy over £28 billion each year. Yet only 1% of public grant funding for medical research is spent on eye research. That’s just £20 for each person living with sight loss.

Fight for Sight is determined to change this – but they need your support. Taking part could help them secure urgently needed funding for pioneering eye research projects.

Fight for Sight have asked Populus and Kaleidoscope Research to conduct the survey. We are independent research organisations and the information you share with us via this survey will be used for research purposes. The findings may be used as part of the evidence Fight for Sight present when seeking funding for eye research projects, in reports and as part of their publicity and campaigns work. Any findings published will be anonymised and not used in a manner which could identify you. We will respect your privacy at all times and your information will be kept securely.

To take part in the survey please click on the link below or paste it into your browser, it should take no more than 15 minutes to complete.

Take the survey online here.

If you would prefer to complete the survey by telephone, please contact Fight for Sight during office hours on 020 7264 3900 and they will arrange this for you.

If you have any queries or survey related issues please contact [email protected]

How well will my child see?

Researchers from the University of Leicester have identified a new way of predicting the future vision of children with infantile nystagmus. The research, published in the journal Ophthalmology has developed a grading system for retinal development in infants and young children with the condition, providing an important tool for ophthalmologists to determine their future vision.

This new research, funded by Fight for Sight and the Nystagmus Network, highlights for the first time that we can use this existing grading system to predict future vision in children and infants with nystagmus. Importantly, it is more reliable than the current tests used.

Infantile nystagmus is a condition of involuntary (or voluntary, in some cases) eye movement, acquired in infancy or later in life, that may result in reduced or limited vision. It affects approximately one in 500 people. Due to the involuntary movement of the eye, it has also been called “wobbly eyes”, and often comes with a negative social stigma.

Nystagmus can be challenging to diagnose in children and often the level of sight loss a newly diagnosed child will experience is unclear, leading to significant anxiety for parents who fear their child will develop severe visual impairment.

With the advent of hand-held optical coherence tomography (OCT) – a non-invasive imaging test that uses light waves to take cross-sectional images of the retina – healthcare professionals are now able to obtain detailed information about the status of retinal development in young children and infants. These scans can be obtained in a few minutes and can be performed non-invasively in children.

In 2011, lead researcher, Dr Mervyn Thomas, had developed a grading system based on optical coherence tomography (OCT) for arrested retinal development and found that this system is able accurately to predict the prognosis of vision in children and adults with arrested retinal development.

Dr Mervyn Thomas, said “This study required a lot of patience and cooperation from our nystagmus patients and families. The result is now we have a validated method of predicting prognosis in children and infants with infantile nystagmus. This will allow clinicians to plan better for patients whose vision is likely to be worst affected by nystagmus, while also helping to reassure and enable patients and families to optimise the development and educational attainment of the child during this crucial, formative stage.”

Fight for Sight’s Head of Research and Policy, Dr Rubina Ahmed, said “This grading system is a positive step towards better care for children with infantile nystagmus and will help to allay concerns of parents with unanswered questions related to visual development and prognosis for their children and may in future lead to better care plans for individuals.”

Sue Ricketts, Executive Information and Development Manager at Nystagmus Network, said “This development highlights the importance of research investment in nystagmus diagnostics and also answers the question most parents of newly diagnosed babies have: How well will my child be able to see?”

This research was jointly funded by Fight for Sight and Nystagmus Network via the Small Grant Award, awarded to Dr Mervyn Thomas and Professor Irene Gottlob.

Funding research into blindness

Please listen to the ‘In Touch’ programme on BBC Radio 4 to catch Head of Research at Fight for Sight, Dr Rubina Ahmed and Professor Chris Hammond talking about the launch of their new 2020 campaign.

During the show, they’ll discuss the ‘1 to 20’ funding gap – only 1% of public funding is dedicated to treating sight loss despite 20% of people being affected by serious sight loss in their lifetime – and why they’re calling for an increase in funding for eye research.

Listen here

To read more about the Fight for Sight campaign, please click here

Our New Year resolutions

… and our promises to you, the nystagmus community

Thanks to your support and generosity throughout 2019, the Nystagmus Network can confidently resolve and promise that in 2020 we will

ONE – provide even more support and information for everyone living with CN or AN, their friends and family and the people helping them to reach their potential and enjoy a better quality of life

TWO – raise even more awareness of this complex condition to bring about a better understanding of its affects and how schools, employers, companies and organisations can all help people living with nystagmus

THREE – foster and fund even more research into genetics, diagnostic testing and potential therapies so that nystagmus symptoms are better managed, outcomes improved and we can all hope for prevention and even a cure in the future

Take part in sight services research

You can take part in a new study of services for people with impaired vision.

Commissioned by major sight loss charities, the research aims to drive improvements to services.

Phone interviews last 40 minutes and anyone anywhere in the UK can take part. Participants will receive £30 as a thank you.

Please click here to take part.

Mike wears his Nystagmus Network T short and smiles for the camera

Trekking through Middle Earth for nystagmus research

Follow Mike’s wiggly progress on his Facebook page, here and donate to his Nystagmus Network fundraising page, here.

A sight-impaired young Englishman, Mike Larcombe, is preparing to trek across New Zealand to raise money for a complex eye condition that blurs his vision.

Mike has nystagmus, which he refers to as “wiggly eyes” and so does his young nephew.

Born in Southampton, UK, Mike has lived more recently in Australia and spent holidays in New Zealand. He says:

“I have a deep respect for New Zealand, having spent several months there on a working holiday previously. I relish the chance to do something positive to help others with nystagmus. ”

Mike will set off from Bluff at the tip of the South Island on 16 December to hike along the Te Araroa or Long Pathway trail, all the way up to Cape Reinga at the top of the North Island.

He expects to be walking for 4.5-6 months, wearing through about 6 pairs of shoes. He’ll be camping and staying in huts and hostels along the trail, paying his respects to Maori culture, while raising funds for the nystagmus community.

The funds raised will go to nystagmus charities in New Zealand and Britain for research and support – the Blind & Low Vision NZ, Nystagmus Network and Gift of Sight. All 3 charities are working towards a better understanding of the condition and, ultimately, to find a cure.

Mike says he wants to demonstrate to other people with nystagmus, including his 2-year-old nephew, Archie in Britain that they can still live rich, full lives.

Despite his much-restricted vision, Mike graduated as an electronics engineer. He has been working in Brisbane, but has resigned for the trek.

“While I’m unable to drive a car because I can’t see far enough to qualify for a licence, I can work closeup on complex electronics equipment,” said Mike.

“I’m confident I’ll be able to wind my way safely through the land many people around the globe now know as Middle Earth. If I do stray from the path, I’m sure a friendly Hobbit or local Kiwi will guide me in the right direction.”

“When you have restricted vision, other senses come into play – smell, touch and sound in particular.”

“I image myself absorbing those other stimuli as I lightly tread the earth through the islands of New Zealand – a very special place with an incredibly rich culture.”

You can follow Mike’s wiggly progress on his Facebook page, here and donate to his Nystagmus Network fundraising page, here.

Fight for Sight launches survey to gather insights on personal impact of sight loss

GUEST POST

Fight for Sight is launching an online survey to gather broader insights into the personal impact of sight loss and eye conditions. The charity invites those affected by sight loss – either personally or indirectly via someone they care for – to participate in the survey and strengthen the case for urgently needed eye research funding.

The survey comes in response to shocking findings that sight loss costs the UK over £28 billion each year, yet only 1% of funding for public services is spent on eye research. This equates to just £20 for each person living with sight loss.

Fight for Sight believes that despite the evidence, the scale of this growing health challenge is not being taken seriously. Determined to change this and to build a case for more eye research funding, Fight for Sight desperately needs the input of those affected by sight loss to demonstrate its impact and to secure more funding for pioneering eye research.

Fight for Sight’s Chief Executive, Sherine Krause, said:

“In launching this survey, we hope to gather some valuable insights into the impact sight loss can have on those living with it. Unfortunately, sight loss is viewed by many people as inevitable. But we know its impact – for many people – can be devastating, from both a personal and financial perspective.

“We’re determined to build a case to demonstrate this, in order to be able to fund life-changing research. Fight for Sight’s pioneering research has already led to transformational treatments and our science is on the verge of future cures. With more funding, we hope to radically reshape the future for everyone affected by sight loss.”

Participation in the survey involves a short 15-minute phone interview or online survey in which respondents share information and answer questions on how living with sight loss or an eye condition impacts their life or that of the person they care for.
Interested participants should fill in the following short questionnaire to register their interest in taking part: https://www.surveymonkey.co.uk/r/TG2PRLX, which takes less than five minutes to complete, or call 020 7264 3900.

When the full 15-minute survey is launched in early 2020, those who have registered their interest will be contacted and invited to take part in a 15-minute online survey. The survey can also be done over the phone if this better suits access needs.
To register interest in taking part, please complete this short questionnaire by following this link: https://www.surveymonkey.co.uk/r/TG2PRLX or call 020 7264 3900.

Participants can really help to transform the eye research landscape and build a case to secure urgently needed funding for pioneering eye research projects.

-ENDS-

Contacts:

Alice Mitchell, Senior Media and Communications Officer; Direct line: 020 7264 3917; E-mail: [email protected]

About Fight for Sight

Fight for Sight is the leading UK charity dedicated to funding pioneering research to prevent sight loss and treat eye disease.

The charity currently invests over £8m in 160 research projects at 49 different universities and hospitals across the UK.

The organisation’s research covers both common and rare eye diseases and conditions including age-related macular degeneration, glaucoma, inherited eye diseases and those linked to other conditions like stroke and diabetes.

Over the course of Fight for Sight’s history the charity’s achievements include:

the creation of the corneal transplant service
new treatments to save the sight of premature babies
research leading to the world’s first clinical trial of gene therapy treatments for choroideremia, an inherited condition that causes blindness in men
the design of a new eye test that can detect the early stages of sight loss in age-related macular degeneration
the identification of new genes responsible for glaucoma, retinitis pigmentosa, keratoconus and other corneal disorders
supporting the development of Peek, a Portable Eye Examination Kit that uses a unique smartphone-based system for eye testing anywhere in the world

Fight for Sight social media:

Facebook: https://www.facebook.com/fightforsightuk

Twitter: https://twitter.com/FightforsightUK

Instagram: @fightforsightuk

Help Fight for Sight study the effects of sight loss

Here’s a research participation opportunity thanks to our friends at Fight for Sight.

“We’re launching an online survey to help demonstrate the personal impact of sight loss. We’re inviting everyone affected by sight loss or an eye condition – either personally or indirectly via someone they care for – to participate in the survey and to strengthen the case for urgently needed eye research funding.

Sight loss costs the UK over £28 billion each year, yet only 1% of funding for public services is spent on eye research. This equates to just £20 for each person living with sight loss.

Yet despite the evidence, the scale of this growing health challenge is not being taken seriously. We need the input of those affected by sight loss to demonstrate its impact and to secure more funding for pioneering eye research.

How to get involved

We’d love you to take part in a short 15-minute interview or online survey, sharing information and answering questions on how living with sight loss or an eye condition impacts on your life.

Please fill in the following short questionnaire, registering your interest in taking part in our survey. This should take less than five minutes. When the full survey takes place in early 2020, you will be contacted and invited to take part in a 15-minute online survey. The survey can also be done over the phone if this better suits your access needs.

Please register your interest through a short questionnaire by clicking this link.“

Handheld OCT can predict future vision in infantile nystagmus

Dr Mervyn Thomas of the Ulverscroft Eye Unit, University of Leicester developed a grading system for arrested retinal development as a med student in 2011. 8 years later the team shows it can predict future vision in preverbal children with nystagmus.

This development highlights the importance of research investment in diagnostics and also answers the question most parents of newly diagnosed babies have: How well will my child be able to see?

Read the full article from the American Academy of Ophthalmology here.

Nystagmus and sleep

Parents often report that their children experience problems sleeping and wonder whether there is any connection with nystagmus.

Now a team at University College, London is conducting a research study into vision impairment and sleep patterns.

Jess Marshall is a research assistant at UCL Institute of Education. Jess is working on Dr Jessica Hayton’s project examining sleep in children with vision impairment (aged between 5-11 years). The project is funded by the British Academy/Leverhulme small research grant and is ethically approved by the Ethics Committee at UCL.

The aim of the study is to establish whether sleeping problems are evident in children with vision impairment. To do this, they will be comparing sleeping patterns of sighted children to those of children with a vision impairment. They are now recruiting any sighted child aged 5-11 years and any child with a vision impairment (ranging from partial sightedness to blindness).

The study explores sleep and sleep-related issues using actigraphy (a motion sensitive non-invasive wristwatch), sleep diaries and parental report questionnaire. The sleep diary is to be kept for a minimum of 5 nights if possible and the actigraphy is optional, but it does help!

Participants will not need to travel to London as the actigraphy watch can be posted to a home address.

If any parents/carers might be interested in their child(ren) participating, please email Jess ([email protected] ) or Dr Hayton ([email protected]). Parents and participants will then be provided with more information.