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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Congratulations to Ronan Ely who not only completed the Dublin City Marathon in 4 hours 30 mins, sale he raised €2, prostate 700 for the Association. Ronan, who is studying Business Studies in Cork Institute Technology, travelled to our recent Information Evening to present the Association with a cheque for €2,400.
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We recently had a query from one of our parents about Root Canal Treatment. On a routine visit to the Orthodontist in St. James’s Hospital our parent was advised that root canal treatment might be needed for daughter Christina. The question raised was where could root canal treatment be received and would there be a cost.
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On September 14th 2004 the first international conference of European Cleft Lip & Palate support groups took place. CLAPA Uk hosted the event, nurse which was held in London. It was a tremendous success thanks to all the speakers and delegates who made it such an interesting day. CLAPAI chairman Eddie Byrne made a presentation outlining how cleft is treated in Ireland and how the Association operates here. Valuable contacts have been made particularly with Associations that are similar in size. It is planned to hold another conference next year.
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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