In the words of Sally Ann Lynch “genetic counselling” is a most misinterpreted concept! Way back when, counselling meant advice and it is in this context that it is still used today when describing genetic services. The service is most certainly not “touchy feely”, although all concerned are very pleasant! The service is not one of telling people what to do either nor is it about finding fault. So what is the service about?
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Orthodontics – Presentation
At our Information Evening on the 22 Novmber, Mr. McKiernan gave an excellent presentation on Orthodontics for cleft including treatments available and their associated timelines.
Orthodontic treatment breaks down into five stages. Importantly, each individual will have a unique treatment. For example pre surgical orthopaedics is only suited to a small number babies. Similarly not all children will need a bone graft and of those who do not all will need work beforehand. The stages are …
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Information Evening (Nov’05) – Report
Our Information Evening (22nd November) was attended by some 34 people, and if success can be gauged by the number of questions emanating from the audience, then this evening was a resounding success. Whether the topic was orthodontics or genetics, the audience displayed great interest in the subject matter and were very appreciative of the speakers’ contributions.
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European Co-operation
European Congress of the European Network of Cleft Support Organisations
Bruges, Belgium, 7-8 October 2005
I was delighted to represent our Association at this year’s European Congress of the European Network of Cleft Support Organisations held in Bruges, Belgium, from 7-8 October. Representatives were also present from the UK, the Netherlands, Norway, Sweden, Finland, Germany, and of course our hosts, Belgium. This is the Association’s second year attending the European Congress.
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New Co-ordinator Appointed (September 2005)
We are delighted to let you know that Laura Duggan has recently been appointed as Cleft Co-Ordinator succeeding from Claire Kelly. She will operate between St. James’s Hospital and Our Ladies Hospital for Sick Children Crumlin, Dublin.
Laura comes into the team with a General Paediatric Nursing and a Managerial background. Having most recently worked as a Ward Manager in The Children’s University Hospital, Temple Street, Laura has a considerable amount of experience in Paediatric/Family Centered Care. We wish Laura well and look forward to working with her in her new role.
Marathon Fund Raising
We want to wish Noel Conway all the best when he runs the Dublin City marathon in aid of CLAPAI. This year the marathon is expected to reach a record number of participants – 10,000! Noel has been inspired to fund raise for the Association by his baby niece Ellie. We’d like to thank Noel for his time and effort. You might say he is one in ten thousand!
Hospital News – Bone Graft Surgery
Traditionally children that have their first surgeries in OLHSC Crumlin move to St James for their bone grafts. From 2006, bone graft surgery will revert to Crumlin. The Association is very pleased with this move, as we believe wherever possible children should receive medical treatment in a children’s medical environment.
Kilimanjaro – The Summit
In October 2005 Laura, Joe, Niamh & Andrew made it to the summit of Kilimanjaro. and in doing so they raised €4,000 for the Association! Here is Laura’s account of the journey.
Kilimanjaro – The Summit
By Laura Fingleton
On the 20th of October last, myself, Niamh, Joe and Andrew set off on what was to be one of the most physically challenging experiences each of us had ever undertaken.
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Information Evening (Nov’04) – Report
Our Information Evening (17th November) was attended by some 30 people who took a very encouraging interest in the speakers’ presentations. First up was David Orr, Consultant Plastic Surgeon, who spoke of his involvement in an Operation Smile project twelve months previously in Kenya. Next up was Julie Young, Speech and Language Therapist, who spoke on feeding matters. Questions from the audience indicated a concern about the quality of advice and guidance available in maternity hospitals on feeding the child with a cleft palate.
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Ena Lynn Moves On
Many of our readers will know Ena Lynn from her work with the Health Research Board. For those of you that don’t, Ena has had the extraordinary job of collecting clinical data and samples from cleft affected families all over Ireland. When she started three years ago, there were 112 samples (collected with the help of the Association). Thankfully at the time there were enough samples to help researchers secure a fund for further work.
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