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Spring 2001 newsletter

Keratoconus Group members will see from this newsletter that a lot has happened since our last mailing. The Group organised a successful conference in Birmingham in June - our first National Conference outside London. The Committee is currently working on making the material from the Conference available to all members, and taking forward several of the ideas that came from the day.

The Committee will be going through a period of change over the next 12 months, as Mike Oliver Chair of the Group for the past 11 years has decided to stand down. Some of you may also notice that the newsletter has changed design bringing it into line with our factsheets. Please feel free to comment on the new layout.

Fundraising is now a priority as the Group needs to replenish its funds following the 2005 National Conference and the production of a series of publications. Please see the accompanying letter from our outgoing chair, Mike Oliver requesting funds. Any donations small or large will be gratefully received and of course put to good use. Please fill in the Gift Aid form to enable the charity to claim the extra funds.

A Great Start to our Fundraising Appeal

Grateful thanks to one of our members, Bob Smith from Leeds, who raised £635 for the Group through a charitable trust.

This generous donation will go towards producing DVDs and booklets of the June conference.

Thank you to Mike Oliver

Mike Oliver, who has been Chair of the trustees of the Keratoconus Group for 11 years, has resigned from this position following his move to the North West. It is thanks to Mike that what started as a small support group based around Moorfields became a national charity which now has a mailing list membership of 900 people throughout the UK (with many more visiting out website). It was Mike who was brave enough to persuade the rest of the committee that we should organise a National Conference in 2001 and it was his tireless work which made that first conference such a success. We went on to hold another conference in 2003 and out most recent one in June of this year in Birmingham, which again Mike organised with great success.

To demonstrate that it wasn't just conference he could organise, it was Mike who dreamed up the Thames Path walk. He then translated it into reality, planning each days route, inspiring other Group members to trudge the path with him, and above all, walking the entire route himself!

During his time as Chair, the Group has gone from strength to strength. We will miss his enthusiasm, ideas, diplomacy and expert chairing skills. Above all we will miss the sheer hard work he put in to make things happen. So I'm sure you'll want to join the committee in saying a huge thank you to Mike for everything he has done and hope that he will continue to inspire us as one of the trustees of the Group.

Employers' Factsheet

Copies of our factsheet for employers, launched at the 2005 conference are available from the Group. Email, write or ring for copies.

Conference 2005

Delegates at the 2005 conference Around 100 people attended our third National Conference in June. Our previous two conferences were held in London, so this time the event was in Birmingham which meant many more of our member in the West Midlands were able to come, although others came from all parts of England, Wales and even Scotland. It was a full day, with talks about Keratoconus from a variety of perspectives.

Dr. Selwyn DexterDr. K. Ramaesh, Corneal Ophthalmic Consultant from Glasgow talked about eczema, conjunctivitis, dry eye and associated problems with lens wear affecting people with Keratoconus. Mr. John Dart, Consultant Ophthalmologist from Moorfields discussed various surgical options for Keratoconus, when surgery should be considered, and contra-indications for surgery. His presentation included a short video of a corneal transplant operation. Ken Pullum, Senior Optometrist at Moorfields, discussed non-invasive management options (the various contact lenses available for Keratoconus) and asked how these could best be delivered.

Ken PullumWere hospital clinics the best way to provide appropriate lenses, or should Keratoconus be managed in the community? From the patient perspective, one of our West Midlands members, Gareth Beynon, talked about his experience of Keratoconus and described how he had educated his employers about ways of providing a suitable environment for him to continue working when he was having difficulties with his Keratoconus. Matt Vaughan, one of the founder members of Keratoconus Australia who is in the UK for a couple of years, talked about the Australian experience of setting up a support organisation there and described their programme of seminars and the DVDs they produce for their members.

The day also saw the launch of our new factsheet "Keratoconus at Work" which describes the condition for employers, gives suggestions of how they can help and gives sources of help for those with Keratoconus. There were also opportunities during the day for questions from the floor to the various speakers. Last but not least, there was the opportunity to meet and talk to a large number of people with Keratoconus over lunch and throughout the day.

We are currently raising funds to enable us to produce a booklet of the proceedings and to produce a DVD of the event so that all our members can share in what was a very interesting and worthwhile day. Our grateful thanks to Marian Bargery, West Midlands Group organiser, for finding such a good central venue in Birmingham where the Conference could be held. And above all, our thanks to Mike Oliver for organising the event.

Mark BennisterFundraising run

Committee member Mark Bennister (pictured) raised over £200 running the London 10K run earlier this year.

Scottish Keratoconus Group

The Scottish Keratoconus Support Group has now been running for two years. The Group has been meeting in Glasgow at the Strathclyde Chaplaincy Centre, but now plans to have some of our future meetings in Edinburgh as Mr. Cameron of Cameron Optometry has offered us the use of a room in his practice. There are 30 people on our mailing list. The Group keeps in contact with each other by email in between meetings. Here is a summary of the three meetings held so far this year.

March 05 - Celia Traynor - Support Worker for eye patients at Gartnavel Hospital, Glasgow
Visibility (the Glasgow and West of Scotland Society for the Blind) conducts local research to back up national research. As a result, Celia was appointed by Visibility, but funded be the Health Board. She now has indefinite funding and has seen over 2000 patients in the last two years. This is a patient led service. She answers patent queries, including registration, access to work, benefits and quality of life. She deals with adult patients attending Gartnavel Hospital and spoke to us about access to work, benefits available to visually impaired, special equipment and how to go about getting registered as blind or partially sighted.
June 05 - Report on the Birmingham Conference
I shared with the group what had happened at the 2005 conference and we had time to talk to each other and support each other.
October 05 - Cameron Optometry in Edinburgh
Mr. Cameron is an experienced optometrist who sees Keratoconus patients referred to him from the Edinburgh hospitals. He gave an excellent presentation on contact lenses and KC and answered all our questions. He spoke about contact lenses fit, the type of cone shapes in KC, type of lenses available, the Keratoconic challenge, solutions that we can use in the eye and the latest developments including stem cell growth.
 

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