As fundraising efforts have shown, there is a gap in public awareness of cleft lip & palate. In recent times however there has been more national publicity, which is to be welcomed. In July, Laura was on TV3 with Mr. Earley. The topic under discussion was the real value of plastic surgery versus cosmetic surgery. Both participants came across well. The result was the profile of cleft was raised at a national level.
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The theme for this year’s conference was “Setting a positive agenda in cleft & craniofacial care”. The conference was attended by members of cleft teams from both Temple Street & Crumlin hospitals.
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The Association has been talking to Mr. Mc Cann about new developments in the West. We are happy to report that recruitment is under way to get a full time Speech and Language Therapist along with a Counsellor and hopefully a Cleft Coordinator.
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The Association’s first ever Family Activity Day, held in Arklow, Co. Wicklow, on the 19th June 2004, has proved a great success. Ten families attended, including some twenty children and their parents. Children ranged in age from 1 to 16 years, and they participated in water-based activities, football and fun games. Parents were not slow to participate and everyone admitted to having a wonderful time. Canoes, kayaks, row boats, speed boats! And no one afraid to get their feet wet. The soccer game proved a forty-goal thriller! As for the ‘Royal Rumble’!
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Cleft treatment has got an amount of publicity recently. There were two articles in the Irish Times Health Supplement on the 23rd March. The main article dealt with the current crisis in Speech Language Therapy services with contributions from several voluntary organisations including CLAPI. The second article was specifically about Cleft treatment & early SLT intervention. Again CLAPAI made a contribution to this article.
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The Health Research Board wishes to sincerely thank all the CLAPAI members who have taken part in our study so far. The study has continued to expand with over 1, seek 000 families presently involved. The more people we have in the study the more valid our research findings will be. The study aims are to find out what causes clefts and to investigate how clefts can be prevented from occurring. Without the valuable input from families, we would not be able to undertake this important research.
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The Association’s AGM took place on the evening of Thursday, 16th October, in the William Stokes Building, St. James’s Hospital, Dublin 8.

The AGM was preceded by addresses from our two guest speakers, Ms. Helen Smith from the UK organisation Changing Faces, and Ms. Laura Fingleton, the newest addition to the national committee of the Association.
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The Speech and Language Therapy Department in the Childrens’ University Hospital Temple Street are delighted to announce that Dr. Triona Sweeney has been appointed adjunct Professor in Speech and Language Therapy by the University of Limerick. This is a joint Academic/Clinical Specialist post and is the first professorship in the Allied Health Professional group to be attached to a teaching hospital.
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Stickler Syndrome is a RARE condition associated with Cleft particularly Pierre Robin. It affects areas of the body where there is cartilage for example joints. There are only 12 diagnosed cases in Ireland.

Whilst there is a newly formed support group for Stickler Syndrome ethically they cannot be given families’ names and so making contact is difficult. If you are one of those families and would like to join the group please contact Theresa Corrigan 042 9665548.

See www.stickler.org.uk for more information on Stickler Syndrome.