World Smile Day, October 3rd

CLAPAI, Proudly Supporting World Smile Day. Here we reproduce an appeal by Operation Smile Ireland.

“Operation Smile Ireland launched its first ‘World Smile Day‘ national collections campaign on September 17th in Dublin. We had many supporters on hand including rugby star, Ian Madigan, CLAPAI representative Sean Haughey, and Professor Triona Sweeney and Anne McGillivary who many of you will know from the Cleft team at Temple Street (both volunteers of Operation Smile).

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Rugby star Ian Madigan, CLAPAI representative Sean Haughey, Professor Triona Sweeney and Anne McGillivary from the Cleft team at Temple Street

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Disney’s The Lone Ranger – Shame on You

The Cleft Lip and Palate Association of Ireland (CLAPAI) would advise parents to be prepared for the forthcoming release of the Disney movie “The Lone Ranger”, due out on the 9th August, certificate 12a.

Disney describes the villain of the movie (Cavendish) as “a ruthless outlaw whose terribly scarred face is a perfect reflection of the bottomless pit that passes for his soul”.

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Death of Professor John Scott, Distinguished Researcher

The death has occurred of Professor John Scott of the School of Biochemistry and Immunology, Trinity College, Dublin. Professor Scott contributed greatly throughout his distinguished career towards efforts to identify the cause(s) of orofacial clefts and neural tube defects (NTDs).

The Cleft Lip and Palate Association of Ireland extends its deepest sympathy to the family of Professor Scott.

The genetics and biochemistry of orofacial clefts was a particular area of interest of Professor Scott’s. As part of an international collaborative research team, Professor Scott, together with other Irish researchers, provided data for a set of Irish affected families that confirmed previously unidentified genes associated with cleft lip in children. The results of the study were published in the leading international science journal, Nature Genetics, in May 2010. The Cleft Lip and Palate Association of Ireland was instrumental in the gathering of the large sample base that made this research possible.

The funeral mass will be held at 11.30am on Wednesday 2nd January, in the Carmelite Church, Whitefriar Street, Dublin. Full details, including a wonderful tribute by his daughter Rachel, available on rip.ie.

May he rest in peace.


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22q11 Annual Conference

Venue: Red Cow Moran Hotel, Naas Road, Dublin 22.

22q is a very rare condition that amongst other symptoms involves cleft palate. This conference on Saturday 22nd October is an opportunity to meet other families, healthcare professionals and experts and admission is free.

Programme.

09:30 a.m. Dr Alex Habel, Consultant Pediatrician to the North Thames Regional Cleft Unit based at Great Ormond Street Hospital NHS Trust, London.

10:10 a.m. Dr Debbie Sell, Head of Speech and Language Therapy Dept, Great Ormond Street Hospital for Children NHS Trust, London.

10:50 a.m. Prof Kieran Murphy, Royal College of Surgeons in Ireland, Structural & Functional Neuroimaging Research Update.

11:10 a.m. Dr Erik O’Hanlon, Royal College of Surgeons in Ireland & Anne Lawlor, 22q11 Ireland on Research Findings – Making Sense of Behaviour.

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Attention all Parents

Are you a parent of a child with a diagnosis of a Cleft Lip and/or Palate? If so, for sale would you be interested in helping to inform the development of services so that they might better support both your child and yourself?

The Cleft Team at The Children’s University Hospital, order Temple Street, and the Cleft Lip and Palate Association of Ireland, are working together to identify the support needs of children and parents. To this end, it is proposed to run a focus group at which parents will be given an opportunity to reflect on their experience of having a child born with a cleft lip and / or palate and, from this, to identify supports that parents and families would find useful and appropriate in dealing with the diagnosis and the ongoing condition and its impact on their child.  The Association will be inviting parents to participate in this focus group, which will be facilitated by social work staff from Temple Street.

The information gathered through the focus group will be used to assist the development and piloting of support services for parents and children attending Temple Street. Participants will be kept informed about the outcomes from the focus group and any subsequent developments through the newsletter.

The Association will be inviting parents to participate in this focus group in the coming weeks as part of a random selection. Date, time and location will be included in the invitation.

If you have any queries at this stage please contact Mrs Georgina Wade CLAPAI on 087 1319803, or bye-mail to info@cleft.ie


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Cleft Conference Photos

The Dublin Cleft Centre Conference was held on the 13th March, nurse 2008.  The theme of the conference was “Cleft Lip and Palate: The Journey of Care from Birth to Adulthood”.

Below: Cathaoirleach Georgina Wade with Professor Brendan Drumm, CEO of the HSE.
Georgina Wade and Professor Brendan Drumm

The conference was held in the Hilton Dublin Hotel, Charlemont Place, Dublin 2. The aim of the conference was to provide an overview of the journey of care of a baby born with Cleft Lip and Palate from birth to adulthood.

More photos from the conference can be viewed on our photo gallery.


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CLP Resource Pack for Speech and Language Therapists

The “Cleft Lip and Palate and Palatal Anomalies SIG” are a Special Interest Group that have recently produced a resource pack for Speech and Language Therapists working with children with Cleft Lip and Palate in different clinical settings.

This resource contains very specific information ranging from the care pathway to therapy that can be conducted with children from earliest stage of babble stimulation right through to specific techniques to articulation therapy as well as instrumental assessment techniques that are available.

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Podcasts Now Available!

PodcastWe are now making available our posts as podcasts, courtesy of the Odiogo service. So now you can LISTEN rather than read, should you like!
AND by subscribing to our podcast you can download new posts in mp3 format to your iTunes or Juice player and listen to them as and when you want.

OR, if you prefer, select the ‘listen now’  button and listen in situ!

How to subscribe… | RSS Podcast Feed |

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Operation Smile Ireland – Largest Ever Effort

Listen to this post, see belowIn November 2007, 23 Irish medical volunteers went to Ethiopia, Kenya and Morocco.  Between them they treated 250 patients in a two-week period. Co-ordinator Anne McGillivary was based in Jimma, Ethiopia, along with Mr. David Orr and Triona Sweeney.  The conditions in Jimma were particularly challenging but the team managed to screen 157 patients and perform 127 surgeries.  Patients’ ages ranged from 3 mths to 68 years!


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