Are you a parent of a child with a diagnosis of a Cleft Lip and/or Palate? If so, 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, 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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Mini-marathon times is fast approaching! The Association relies heavily on donations and sponsorship from the mini-marathon, which finances the majority of our activities.

The Flora Women’s 10k Mini-marathon is on Bank Holiday Monday, 7th June.

As ever, we need YOUR help. Sponsorship cards and T-shirts can be arranged by contacting Anne Gilsenan at 087 1319803, or annegilsenan@cleft.ie. Anne requires name, home address, (email address would be great too), home number, mobile number and number of cards and t-shirts required.

The first Entry Form is in the Evening Herald on Wednesday 3rd March 2010, or register online at www.florawomensminimarathon.ie.
Closing Date: 27th April 2010, or when maximum number of entries is reached.
Age Limit: Participants must be at least 14 on Mini Marathon Day.

Good Luck Ladies!

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The Dublin Cleft Centre Conference was held on the 13th March, 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.

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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The Cleft Lip and Palate Association of Ireland is holding its Annual General Meeting and an Information Evening on Thursday, 15th April, 2010, at 8pm. Doors open from 7:15pm.

Venue: The Louis Fitzgerald Hotel (near Joel’s), Newland’s Cross, Naas Road, Dublin 22.

The Information Evening theme is “Speech and Hearing”.

Location Map:

View Louis Fitzgerald Hotel in a larger map

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We urgently need two new committee members to cover for a vacancy and for new projects that we want to undertake.

The committee meets 10 times a year in the Bankers Club in Dublin 2.  Meetings last from 8:15pm to 10:30pm approximately.  We divide work to suit our respective talents and interests.  We always try to maintain a balance in keeping work manageable for volunteers and doing all the things we want to do to make life better for families.  If you can help in some way please phone 087 131 9803 or email info@cleft.ie

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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.

It was launched at the IASLT (Irish Association of Speech and Language Therapists) conference on 22 and 23 October.  The final resource which is available on CD and is part funded by CLAPAI.  The resource is be available on request to Speech Language Therapists.

Parents can advise their local Speech Language Therapists that the pack is available and can be requested by emailing cleftsig@gmail.com or by contacting one of the below directly.  Please note that this is only available to professional SLTs. It is not designed for any other use.

The Association would like to thank the dedicated members of the SIG that have taken this initiative.  It will no doubt assist local professionals and in turn the families that they are working with.

Well done all!  Thank you also to our fund raisers who make it possible for us to contribute to this type of innovation.

CONTACT DETAILS

Tanya Gilroy, Senior Speech & Language Therapist, Children’s University Hospital, Temple Street, Dublin 1.
Tel: (01) 8784293 Email: tanya.gilroy@cuh.ie

Nicole Prendeville, Senior Speech and Language Therapist, Speech and Language Therapy Department, Our Lady’s Children’s Hospital, Crumlin, Dublin 12.
Tel: (01) 409 6142 / 409 6198 E-mail: nicole.prendeville@olchc.ie

Julie Young, Senior Speech and Language Therapist, University Hospital Galway, Galway.
Tel: (091) 544943 Email: juliea.young@hse.ie

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Only 10 Euro per pack of 10 cards! (Cost includes postage).

Each pack includes 5 different cards, 2 of each. These striking cards not only help raise funds for CLAPAI but also promote awareness of Cleft Lip and Palate.

To order email info@cleft.ie or phone 087 1319803

Payment can be made by cheque & sent to:
Cleft Lip and Palate Association of Ireland.
C/o 36 Woodlands Avenue,
Dun Laoghaire,
County Dublin,
Ireland

Order now to ensure early delivery!

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We have recently secured funding from the Lotto that will part pay for the reprint of our 10 leaflet series.  We are reviewing the series during the month of October and would appreciate feedback from you.

Send your comments to info@cleft.ie.

We are also working on producing supplemental leaflet that will address specific procedures that occur later in treatment e.g Braces, Bone Graft. This will be a slower process as we will need to work on content, ensure quality and accuracy with our medical colleagues and of course go to print.  If you would be interested in contributing to this process please contact us by e-mail.

Many thanks,
Georgina Wade

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The Rathangan Runners do it again! Another great fund raising event from Anne O Brien and the team. Without them and all of our mini-marathon runners we would indeed be lost.

L-R: Sharon Melia, Natasha Gilligan, Anne O’Brien, Liz Gilligan and Trasa O`Brien.

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Our Family Day was such a success! And what a beautiful sunny Saturday! A great turn out, our biggest to date, and everyone had a ball. Some 48 families or more, and over 200 in attendance between adults and children.

Right: Group Photo taken in Dublin Zoo. Click image to view large size (2019px x 1051px, 790kb).

Thank you to all who came, we expect that there were many tired children on Saturday night! And even more tired adults! And thank you too to the Zoo staff and to the army for hosting and feeding us in McKee Barracks.  This is the third year that the army have been involved with out Family Day, and they have been great!

See Photos of the Big Day!

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Visit www.lyonscharitygiveaway.ie and find out how to nominate our charity to win €10,000.

To enter, Send 1 token from any box of Lyons tea naming the “Cleft Lip and Palate Association of Ireland” as your favourite charity, your name address and telephone number to:
Lyons Charity Promotion, PO BOX 10850, Dublin 2.

Closing date for entries is 31st August 2009.

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Venue: The School of Nursing and Midwifery Studies, Trinity College, 24 D’Olier Street, Dublin.

22q11 Ireland invites you to a Study Morning on Speech and Language difficulties specific to 22q11.2 Deletion / VCFS / DiGeorge syndrome.

Our speakers on the day are USA VCFS experts:

Speech Pathologist and Outomes Studies Coordinator: Eileen Marrinan, M.S., M.P.H.
A true expert in the field of speech disorders associated with cleft palate in general and VCFS specifically, she has been the primary resource for guiding the treatment of speech disorders in VCFS and managing care of patients through the Distance Care program. She is also an expert at multiview videofluoroscopy, a state-of-the-art diagnostic procedure first developed at Upstate Medical University.

Eileen will speak on “The Nature and Treatment of Speech Disorders Associated with Velo-Cardio-Facial Syndrome”.

Doctor Sherard Tatum.
Doctor Tatum has dedicated his career to the care and research of cleft and craniofacial disorders. He is Board Certified in both Otolaryngology and Facial Plastic and Reconstructive Surgery.

Scott will speak on “Surgical Managment of Velopharyngeal Insufficiency in Velo-Cardio-Facial Syndrome”.

RSVP to: twenty.two.q@gmail.com. Telephone: 087 7412856.

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Spring 2009 Issue.

Maternity Packs. - AGM and Information Meeting, 2nd April. - Annual Family Day Out, 13th June. - Mini-Marathon, 1st June. - Fundraising. - Dublin Maternity Hospitals Moving. - Further Adult Cleft Treatment Story by Dave Dowling. - Children’s Section.

Note: There is a file embedded within this post, please visit this post to download the file.

...or view newsletter online

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Update, 8 June: BOOKINGS NOW CLOSED, sorry!

45 families are booked for our day out at the Zoo and McKee Barracks. If you have booked, you will have received a booking confirmation by text or email.  Only families that have pre-booked and are confirmed will be able to join the group in the Zoo and carry on over to McKee.  Details of the day are being forwarded as we post here.  If you have any queries on bookings or logistics please contact us by phone or email 087 131 9803 & info@cleft.ie.

———–

The year the CLAPAI Family Day outing has been organised to visit Dublin Zoo and McKee Barracks. It will take place on Satuday, 13th June. In Dublin Zoo we can look forward to themed guided tours, such as the “Rain Forest Tour” and the “New African Safari Tour” for both the junior and the older children in our group.

Following our visit to Dublin Zoo, we will then walk to the adjacent McKee Barracks for lunch. Following lunch the army have organised for us to visit their Equestrian Centre. We really hope you can join us on the 13th June for a great free day out and also take the opportunity to meet up and chat with other families.

(Booking Form removed, 8 Jun)

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This past year has been a very active one for the Association. As will the coming year. We rely heavily on volunteers, donations and sponsorship from the mini-marathon, which finances the majority of our activities.

The Flora Women’s Mini-marathon is on Bank Holiday Monday, 1st June.

This year more than ever we need YOUR help. Sponsorship cards and T-shirts can be arranged by contacting Anne Gilsenan at 087 1319803 or annegilsenan@cleft.ie.

Entry Forms are published on Wednesdays and Saturdays until the 15th April in the Evening Herald, or register online at www.florawomensminimarathon.ie. 

Closing Date for entries is 21st April or when the maximum number of entries is reached.

Good Luck Ladies!

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Our Information Evening on the 2nd April was a huge success, with the turnout exceeding all expectations! Approximately 60 people showed up, the topic for the evening (”Dental Care All The Way”) obviously  generating great interest.

Our speakers were Doctor Eleanor McGovern, Clinical Fellow Registrar, Paediactric Dentistry, Eamon McKiernan, Consultant Orthodontist with the national brief for Cleft Treatment, and Doctor Aisling O Mahony, Consultant in Restorative Dentistry. Many, many thanks to our three speakers!

Right: Eamon McKiernan, Doctor Aisling O Mahony, Laura Duggan, Cleft Co-Ordinator.

See photos from the evening!

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Topic: “Dental Care All The Way”

(combined AGM & Information Evening)

Doors open from 7:30pm. Admission is free, all are welcome. 

Venue: Louis Fitzgerald Hotel, Newland’s Cross, Naas Road, Dublin 22. (see location map below)

We are delighted to have three eminent speakers for this event:

• Doctor Eleanor McGovern, Clinical Fellow Registrar, Paediactric Dentistry.
• Mister Eamon McKiernan, Consultant Orthodontist with the national brief for Cleft Treatment.
• Doctor Aisling O Mahony, Consultant in Restorative Dentistry.

Our speakers will cover dental treatment from first tooth to braces to finishing treatments.  They will cover: 

• What parents need to do to get the best results for their child.
• How first teeth can be looked after. 
• How second teeth can be managed, and 
• What advanced dentistry is available for young adults. 

This A to Z talk will be of interest to:

• Parents who have a baby, child or young adult in treatment.
• Adults born with cleft who want to know more about modern techniques.
• Medical personnel that works in this area.
• Carers or close relations of a child in treatment. 

The results are really amazing – please come and see for yourself!

To help us plan numbers, please send a text or leave a message on 087 131 9803 or send an email to info@cleft.ie with your name and indicating numbers attending.

Location Map:

View Larger Map

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Notice is hereby given that the Cleft Lip and Palate Association of Ireland will hold its Annual General Meeting in the Louis Fitzgerald Hotel, Newland’s Cross, Naas Road, Dublin 22, on Thursday, 2nd April, at 8pm. 

Location Map for Venue:

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Venue: Banker’s Club, Stephen Street Upper, Dublin 8.

The next committee meeting will take place on Tuesday, 10th February, at 8.15pm.

(see map below for location).

Want to become involved? If you feel you could help out the Association in any way, we would love to have you on board! All you have to do is get in touch with me, Georgina Wade, at telephone 087 1319803 or by e-mail.

The Bankers’ Club is a new building located at the junction of Golden Lane, Longford Street and Stephen Street Upper.

Map of Location:

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A big “Thank You” to Dolores Ryan of McCann Fitzgerald Solicitors, Sir John Rogerson’s Quay, Dublin 2. They had a fundraising gig before Christmas and raised a total of 1,400 EURO for the Association!

Well done Dolores! The Cleft Lip and Palate Association of Ireland really appreciates your efforts.

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