Tag: Fight for Sight

Fight for Sight and Nystagmus Network logo.

Nystagmus Network research investment 2020 – 2021

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.

Fight for Sight logo.

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]

A young child's eyes.

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

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.“

Call for applications

The call for the joint Nystagmus Network / Fight for Sight £250k award to undertake a three year nystagmus research project, is now open.

Vivien Jones, chair of the Nystagmus Network’s research committee, said: “We are delighted to be joining Fight for Sight in funding a post-doctoral researcher for nystagmus. This means we will be bringing new expertise into the field, which we are very pleased to do. It is the biggest investment we have made in research and we are grateful to all those who fundraise for us for helping to make this happen.”

This investment comes as a direct response to an appeal by the nystagmus research and clinical experts attending the UK nystagmus research workshop 2018, hosted by the Nystagmus Network.

The deadline for abstract applications is 11 July 2019. 

Apply here.

Our biggest ever investment in nystagmus research

Thanks to the generosity of our members, fundraisers and supporters and our longstanding partnership with Fight for Sight, the UK’s leading eye research charity, the Nystagmus Network is delighted to be able to announce our biggest ever funding commitment to nystagmus research.

At the Nystagmus Network nystagmus research workshop in September 2018, charity trustees asked the UK research and clinical teams what was the single most meaningful way the charity could support the further development of nystagmus research. Their answer was to fund a post doctoral post. They asked, the charity listened.

Vivien Jones, chair of the Nystagmus Network’s research committee, said: “We are delighted to be joining Fight for Sight in funding a new research doctorate post for nystagmus. This means we will be bringing new expertise into the field, which we are very pleased to do. It is the biggest investment we have made in research and we are grateful to all those who fundraise for us for helping to make this happen.”

Details of the new funded post and application process are below:

Call for the Fight for Sight / Nystagmus Network Project Grants 2019-2020
Fight for Sight and the Nystagmus Network are pleased to offer a joint Project Grant award for up to £250,000 over three years. The call is open to both clinical and non-clinical research scientists wishing to lead a research project to address sight loss associated with nystagmus. The aim of the call is to build research capacity of post-doctoral researchers.
Nystagmus is a complex visual impairment, characterised by involuntary eye movements, affecting focus and depth perception. Currently there is no cure available.

The call for preliminary Abstract Applications opens in early May 2019 via our online system grants.fightforsight.org.uk. The award is highly prestigious made on a fully competitive and peer reviewed basis. The call follows a rigorous two-stage application process. For more details of the assessment process please visit our grant making process.

Eligibility:
• Applicants must be affiliated with UK academic or medical institutions but the research can be undertaken in the UK and/or overseas.
• Applicants must have a contract of employment which extends beyond the termination date of the award
• Research addresses visual impairment associated with nystagmus

Deadlines:
The deadline for Abstract Applications is 11 July 2019. For shortlisted applicants the closing date for Full Application submissions will be 21 November 2019. The successful applicants of the 2019-2020 grants round will be notified in March 2020.

Contact Us:
For any queries relating to your proposal please contact Fight for Sight Fight for Sight: [email protected]

Nystagmus Network research conference 2019.

Nystagmus research conference 2019

The Nystagmus Network will once again be hosting a UK nystagmus research conference in 2019.

Following the success of last year’s event, attended by research and clinical teams from the Universities of Cardiff, Sheffield, Plymouth and Southampton and from Moorfields Eye Hospital and Fight for Sight, the charity will be funding a further event with a view to bringing about ever closer collaboration between teams and seeking out new and collaborative ways to make rare resources stretch even further.

As testing and detection become ever more sophisticated, it is hoped that outcomes for babies born with nystagmus will continue to improve, with effective treatments, prevention and even cure moving closer. In addition, therapies and interventions for young people and adults with congenital and acquired nystagmus continue to be explored.

This year’s conference takes place at the University of Cardiff in September. Delegates from across the UK have been invited and the charity is delighted to announce that representation from Leicester, London, Plymouth, Southampton and, of course, Cardiff is already confirmed. Clinicians, researchers and academics will be joined by Research Manager at Fight for Sight, Neil Meemaduma and those Nystagmus Network trustees who sit on the charity’s research committee.

Research teams will also attend the Nystagmus Network Open Day in Cardiff on Saturday 28 September, where they will be available to speak with delegates about their work.