We had an encouraging start with our inaugural meeting on 9th March.
Mr Mayank Nanavaty spent an hour talking through the different scenarios facing a typical (if there is such thing) Keratoconus patient. Outlining the various treatment options. He also updated us on the latest Laser equipment and surgical developments. He made sure everyone had the opportunity to ask questions and answered them fully.
We hope this will be repeated in the autumn or next spring and with more local advertising, this should prove a worthwhile patient group.
Our London Speaker Meeting and AGM will take place on on Saturday 23rd March, 2019 at 11:00am in the lecture theatre of the Moorfields Clinical Tutorial Unit which is now located at 15 Ebenezer Street, N1 7NP (go up Provost Street which is across the road from the main hospital and you’ll find 15 Ebenezer Street on the next corner).
Our guest speaker is Alison Hardcastle, Professor of Molecular Genetics at the Institute of Ophthalmology Faculty of Brain Sciences, who will talk about the Moorfields genetic study.
Here is her research summary published by UCL INSTITUTE OF OPHTHALMOLOGY:
The complexity of genetic eye diseases is unprecedented. The research focus of our lab is inherited eye disease, from gene discovery to defining cellular function through to development of potential therapies. Our molecular genetic, functional and phenotypic studies have continually resulted in new discoveries that influence patient care. We have defined genetic mechanisms of disease and function of disease proteins in the retina, lens, cornea and developing eye, and have harnessed technological advances in next generation sequencing and stem cell biology to address our research questions. Read more…
This promises to be a fascinating talk followed by our usual Q & A. This is a unique opportunity to ask and listen to questions relating to practical issues encountered by fellow members.
There will be a finger buffet, free of charge, where you can continue exchanging your Keratoconus experiences.
This is an interesting article published by the National Keratoconus Foundation in America:
For many years, it’s been long stated that keratoconus occurs in one person in every 2,000. In an article published in March 2017, the American Journal of Ophthalmology, Dr. Daniel Godefrooij, from the University of Utrecht, refines our understanding of incidence and prevalence of KC(2).
The analysis that KC occurs in 1 in every 2,000 people was derived from a patient registry that was initiated in part by NKCF, over the span of fifty years from the 1930s to the 1980s. Some early supporters of NKCF likely participated in the voluntary survey. Read More…
We had another great 14 mile walk through London. Not as green as last year but architectural interesting and physically challenging, walking to Islington, Camden, then looping past Hampstead Heath, up to Belzise Park and Primrose Hill. The second half took us around regents Park then through Hyde Park and St Jameses Park. We finished with refreshments in the old County Hall building.
Here we are at the end: Laura D’Silva, Nawaz Rahman, Susie Nyman and David Gable
Here is our report from March 2018.
Eight of us formed the KC team among the 500 walkers.We gathered in front of the piano in Moorfields reception for this photo ready for our 14 mile track.
After two of the coldest days in decades, the sun came out to send us on our way.It was a bright crisp morning with plenty of ice still floating on the canal.
The route was perfect, we all found parts of London we had never seen before.It traced the Regents Canal, with a few detours through places of interest, to Little Venice.Then turned south to Paddington for our half way stop.The second section took us through the royal parks and theatre land.
The temperature was ideal for walking, as was the company.We were so busy chatting that the miles flew by and after 5 hours we had completed our task and settled down to coffee, cake and a steel band.
This is an annual event and I thoroughly recommend it for next year.We raised well in excess of £1,000 and are overwhelmed by the generosity of friends and family.
One hiccup, we were so busy talking about the Royal Opera House that we missed the 1/2 mile loop around Lincolns Inn, but don’t tell anyone.
We are pleased to announce that we have entered in to an agreement with Fight for Sight to support an award up to the value of £15,000 to fund research into the condition Keratoconus.
The Award will be funded as to 50% by Keratoconus Group and 50% by Fight for Sight.
We can now announce that the funding has been awarded to a team led by Dr Mouhamed Al-Aqaba at Nottingham University . The project is titled – “The involvement of corneal nerves in the pathogenesis and progression of keratoconus”. The research team has already identified that corneal nerves are dramatically altered in KC and will now be looking at whether these changes have a relation to the severity and progression of KC and identifying the types of nerves involved. This promises to increase the understanding of the condition, and may eventually lead to new interventions. See the Press Release on the Fight for Sight Web Site.
This is an exciting adventure made possible by the generous sponsorship of Barbican Insurance.
What a wonderful evening. An intimate setting with a glass of wine. Perfect lighting bringing her sisters paintings to life.
Australian viola player Michelle Urquhart and her friend Marco van Pagee gave a delightful solo viola and viola duet recital.
Michelle is the NSW representative for Keratoconus Australia and all proceeds from tickets/donations will come to the KC Group to be used for research into KC to benefit those with KC worldwide.
It is worth quoting this from the programme:
“It was whilst studying music at the Sydney Conservatorium that Michelle’s eyesight started to fail. She underwent her first corneal graft. It failed, and for four and a half years she was legally blind. Following serious eye infections and rejection she underwent an emergency graft.
Sight restored, Michelle threw herself back into her music. ‘Having my sight taken away and then having a second chance at music with my successful transplants has been a miracle and the great gift of my life. I want to make the most of every moment and share my music with the world, and support others with Keratoconus.’ “
Visualise is a charity that helps organisations find the answers that make their services more inclusive and accessible to people with a visual impairment and other disabilities. As leaders in their field, they bring extensive experience and knowledge of disability, both personally and professionally, to business and organisations.
To access the Resource Pack For Health & Social Care Professionals Supporting People With Sight Loss – Click on this link