Cornea Donation Shortfall Highlighted

Fight for Sight is working to raise awareness of the importance of eye donations after research has found that eyes are the organ that people would be the least likely to donate following their death.
The eye research charity has highlighted that there is currently a shortfall in corneas that can be used for transplant, with statistics released by NHS Blood and Transplant this month reporting that there are currently 279 corneas in eye banks, despite the target being to have around 350 at all times.

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AGM Report

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

Brighton Branch Meeting

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.

A further meeting will be held on 9th November 2019.

 

Next West Midlands Branch Meeting

The next West Midlands branch meeting of the Keratoconus Group will be held on Saturday 10th August 2019 at 11am.

The venue is the John Lewis Birmingham Community Hub GRAND CENTRAL above New Street Station. Go to the 4th floor, turn right at the top of the escalator, in the corner on left by Audio & TV.


The speaker will be

Professor Martin Rubinstein

talking about Contact Lenses

Those of you at last year’s conference may remember that Professor Rubinstein was in the audience with two of the Conference speakers paying tribute to him; so this should be a very good talk.

All welcome, whatever your history of KC.

FOR FURTHER DETAILS Please ring John Thatcher: 01743 625138.

New members are welcome. Hope to see you there. Feel free to drag and zoom the map below.

View Larger Map

Other Dates for 2019:

12th October – Where  Ash Winter will give his personal account as someone affected by KC who self-published a short book about his story.

Gallery

          

How many people have keratoconus?

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…

Moorfields Eye to Eye Walk

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.

 

 

Fight for Sight / Keratoconus Group Small Grant Award

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.

Latest Update

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.

This is an exciting adventure made possible by the generous sponsorship of Barbican Insurance.

 

Sight Village

Our visit to Sight Village at Kensington Town Hall on the 6th & 7th November 2018 was a great success.  It gave us the opportunity to make some worthwhile contacts.

Look out for us at future events.

Dates for 2019

South West – Sandy Park Stadium, Exeter – 24th April
Central – Cranmore Park, Solihull – 9th & 10th July
South East – Kensington Town Hall, London – 5th & 6th November

Concert in aid of KC research


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 Resource Pack

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