Category: Archive

We are hugely grateful to Mario Saldanha, corneal consultant at Singleton Hospital in Swansea. With his medical student daughter Dea, he will be doing the Cardiff 10K Run on Saturday 3rd September in aid of the Keratoconus Group and to raise awareness of keratoconus and its treatment in Wales. Readers of past KC Group newsletters will know that, until recently, Wales did not fund corneal crosslinking (CXL). Mario was at the forefront of the battle to challenge this. But while the policy has now changed, lack of resources and investment in treatment means that young children and teens with Keratoconus are not receiving Cross-linking treatment on time (for young people, CXL must be offered before the vision has been significantly affected by KC and before it affects their education).

So please support Mario and his daughter and donate to his JustGiving page by clicking – here

JustGiving sends your donation straight to Keratoconus Group and automatically reclaims Gift Aid if you are a UK taxpayer, so your donation is worth even more. Please spread the word about this important cause.

The face to face event at Moorfields and the accompanying live stream was a great success.

You can view the conference videos – Here

Members attending online took full advantage of the facility to post questions and we have done our best to answer them with the help of the speakers. You can view all the questions and answers – Here

Our research into the genetic basis of keratoconus is ongoing. We know that genetic factors determine the risk of developing keratoconus, but environmental changes (e.g., eye rubbing, allergy) can then affect the rate of progression and the severity of the keratoconus. In 2021 we published the results of the world’s first large genetic study of keratoconus, which identified 39 genetic signals that influence the risk of developing corneal change. The study involved the participation of 4669 individuals with keratoconus, the majority from Moorfields Eye Hospital and the UK, and several other centres worldwide. We want to extend these studies and advance this research to learn more about the disease. One method is to enlist the help of families with multiple members affected by keratoconus. If you have three or more close family members diagnosed with keratoconus, such as parents, brothers or sisters, or children, we would be happy to discuss your participation. Participation would involve examining the eyes to confirm the presence of keratoconus and a small blood test to analyze your DNA. We hope that knowledge of the genetic changes that increase the risk of keratoconus could provide a way to identify patients at a stage where intervention could prevent visual loss and potentially lead to more effective treatments. For more information contact Professor Stephen Tuft (s.tuft@ucl.ac.uk).

Eye experts across the UK are calling for your input into a new survey designed to refresh the James Lind Alliance Sight Loss and Vision research priorities that were first published in 2013.Despite on-going eye research taking place across the world, there are still many questions about the prevention, diagnosis and treatment of sight loss and eye conditions that remain unanswered. Funding for research is limited, so it is important for research funders to understand the unanswered questions of greatest importance to patients, relatives, carers and eye health professionals so that future research can be targeted accordingly.Following a review of the existing eye research priorities by the NIHR Ophthalmology Specialty group and the UK Clinical Eye Research Strategy earlier this year, a survey has been developed to help fine tune which of the 98 potential research questions should be taken forward as part of the refresh.Professor Rupert Bourne, NIHR National Specialty Lead for Ophthalmology said:“It’s almost 10 years since the UK last published its eye research priorities and progress has been made in learning more about each of those 12 key areas that were set at the time. This survey is designed to help us assess whether these are still the right priorities for us to be focusing our attention on, and to delve deeper into some of those, or whether there are new areas of eye research that we now need to make a priority.“We are encouraging all those with an interest in eye health and research to take part in the survey to help shape the direction of future eye research.” The Eye Research Priority survey is open to all eye healthcare professionals and researchers as well as patients, carers and members of the public to participate in; and will be open until 9 August 2022. The survey feedback will inform the final Top 10 updated priorities across different eye sub-specialties.

We would like to thank our friends at the National Keratoconus Foundation in America and Keratoconus Australia for organising this competition. Congratulations to our own Ashley Winter for his winning entry.

You can see all the winning entries here: 2021 PHOTO CONTEST WINNERS

Featured image:

“Visual aids are beneficial for my patients in everyday life to see a more defined world.“ Chiara (Italy)

This is an excellent arrangement whereby Small Grants of up to £15,000 are awarded for research. Fight for Sight forms partnerships with charities like ours, each providing 50% of the funding. The advantage for Fight for Sight is that the charity’s involvement helps direct the investment into projects that are likely to be cost effective and beneficial. From our point of view it enables the KC Group to put the donations we collect to good use in the secure knowledge that Fight for sight will handle all the financial and compliance controls. Fight for Sight also ask an independent panel of experts to assess the applications for funding.

The object of our latest partnership is to develop a lab-based laser tool that is compact and portable, and therefore easier to use in both a lab and clinical setting. The tool will detect/monitor subtle biomechanical structural deficits that occur during early-stage corneal disease progression; specifically, localised thinning of the cornea.

Here is the text of the full Press Release:

Researchers at Loughborough University will work together with experts in the ophthalmology field to develop a lab-based laser tool that is more compact and portable, and therefore easier to use in both a lab and clinical setting. The tool will detect/monitor subtle biomechanical structural deficits that occur during early-stage corneal disease progression; specifically, localised thinning of the cornea.

It is anticipated that the outcome of this project will mean that patients can receive treatment to maintain and restore their vision sooner. Ultimately, this will also have considerable impact on addressing the national and global cornea transplant shortage. 

Dr Samantha Wilson is leading the project at Loughborough University. She said: “The ability to understand, detect and diagnose corneal diseases, including keratoconus, at an earlier stage would mean that patients can receive treatment sooner. In the long-term, we expect that such devices will be routinely used by surgeons and ophthalmologists to detect, diagnose and treat corneal diseases before they have a significant effect on vision.”

Philip Jaycock is a Consultant Ophthalmic Surgeon and collaborator on this project at Loughborough University. He said: “The development of devices that can measure the strength of the cornea will help earlier diagnosis and allow further investigation of new treatments to maintain vision and potentially improve vision for patients with keratoconus.”

Chief Executive of Fight for Sight, Sherine Krause, said: “We’re delighted to be funding this valuable research project. We know that early detection is hugely important for sight-threatening eye conditions and this in turn will lead to better outcomes for people with keratoconus and other corneal diseases. Eye research is more important than ever in the age of the Covid-19 pandemic and we must continue to fund research for new, more efficient tests, treatments and cures for the leading causes of blindness and sight loss.”

Chairman of The Keratoconus Self-Help and Support Association, David Gable, said: “Late diagnosis is one of our greatest concerns. There is now an effective treatment known as collagen crosslinking that can stop the progression of the disease, thus avoiding the necessity of specialist contact lenses and transplant surgery. We are happy to fund this important research into the early detection of the condition.”

Many of our members will know of Ashley Winter from the talk he gave at the West Midlands branch meeting and his fund raising efforts for our cause. He was due to speak at our June conference which regrettably had to be postponed. Never one to sit back and take it easy, he has been active again and here is a report recently published on the Fight for Sight website.

Hereford man Ashley Winter has set the Guinness World Record for the fastest male blind-folded mile at 10’ 11”, in aid of Fight for Sight.

Ashley, who has the rare eye disease keratoconus, took on the challenge in February to raise money for eye research. After months of waiting for Guinness World Records to confirm the evidence, the 37-year-old received his official certificate last week.

Ashley is a welfare officer for the Defence Medical Welfare Service and served for 14 years. His eye condition means that the normally round dome-shaped clear window of the eye (cornea) progressively thins, causing a cone-like bulge to develop. This results in poor vision, and currently there is no cure.

The event was organised in the run up to Rare Disease Day on 29 February to raise money for vital eye research that could lead to the next breakthrough for sight loss conditions like keratoconus. 

Ashley was diagnosed with keratoconus in 2010 but he is determined not to let his sight impairment get in the way of his passion for adventure and regularly takes part in challenge events to test his endurance levels and physical strength in the face of his condition. 

Ashley said: “I’m delighted that my Guinness World Record attempt had been approved. By doing these challenges I want to prove to myself and to others with an eye condition what can be done if you put your mind to it. By raising money for Fight for Sight I hope to help find the next breakthrough in treating sight loss conditions like keratoconus.”

Director of Fundraising at Fight for Sight Ikram Dahman said: “A huge congratulations and well done to Ashley for his achievement of setting a Guinness World Record. Ashley is a fantastic ambassador for Fight for Sight and we are very grateful for all his work in fundraising and raising awareness for the charity. Eye research was already a hugely underfunded area and this has only been made worse during the Covid-19 pandemic, which is why the support of people like Ashely is more important than ever. We know that researchers are on the cusp of breakthroughs and we can’t let Covid-19 affect out long-term mission – to create a world everyone can see.”

Ashley is now listed on Guinness World Record’s website as the record holder for the fastest mile blindfolded (male).

This has been copied from the Fight for Sight website
which you can visit – Here

Our well attended, AGM was held on 23rd March 2019.

Three new committee members were appointed namely, Batcho Notay, Caroline Condillac and Jacqui Thomas.  Moira O’Brien resigned for health reasons.  The meeting paid tribute to Moira who has been a supporter of the KC group since its inception.  Click here to see a full list of officials.

The Chairmans report is available here

The meeting was followed by a fascinating talk by Alison Hardcastle, Professor of Molecular Genetics at the Institute of Ophthalmology Faculty of Brain Sciences, who spoke about the Moorfields genetic study.

To read the research summary published by UCL INSTITUTE OF OPHTHALMOLOGY- click here