The Cleft Lip and Palate Association of Ireland is celebrating its 30th anniversary in 2012!

To celebrate, we are having a special concert featuring;

The Garda Band,

with Special Guest, James Nelson of the Celtic Tenors.

Venue: St. Mary’s Catholic Church, Maynooth, Co. Kildare.
Thursday 16th February 2012 at 8:00pm (Doors open 7:30pm).
Please ensure you arrive in plenty of time to be seated.

Tickets: €15 each.

Contact us at e-mail info@cleft.ie, or telephone 087 1319803.

Tickets also on sale locally in Maynooth Bookshop, 68 Main Street, Maynooth. Many thanks to Ursula Byrne and the team.

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10 Euro per pack of 10 cards (includes postage),
or
20 Euro per pack of 25 cards (includes postage).

These striking cards not only help raise funds for CLAPAI but also promote awareness of Cleft Lip and Palate.

Order enquiries: email info@cleft.ie or phone 087 1319803

Payment can be made by cheque, bank draft or postal order (payable to “Cleft Lip and Palate Association of Ireland”) and sent to:
Cleft Lip and Palate Association of Ireland.
C/o 36 Woodlands Avenue,
Dun Laoghaire,
County Dublin,
Ireland

Order now to ensure prompt delivery!

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Venue: Merrion Room, Red Cow Moran Hotel, Naas Road, Dublin 22. (see location map below).

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

Topic: “A to Z of Cleft Surgery”.
We are delighted to have two eminent speakers from the Dublin Cleft Centre for this event:.

Mr David Orr, Consultant Plastic Surgeon, Our Ladies Hosptial Crumlin and Saint James’s Hospital.
Mr Gerry Kearns, Consultant Oral and Maxillofacial surgeon, Our Ladies Hospital Crumlin and Saint James’s Hospital.

With special guests Ms. Anne McGillivary and Ms. Laura Duggan, Cleft Co-Ordinators for Temple Street and Crumlin respectively

All babies born with cleft in Ireland will have either a lip and / or palate repair. Our speakers will cover these early surgeries. What happens next. Surgical options for improving speech. Surgery, in particular, bone grafting as part of the orthdontal treatment. Final surgeries for the young adult and options for older adults who may want to return for treatment. Each baby born with cleft will have their own unique treatment plan. Some may only ever have one operation, others may have more. The aim of this talk is to inform parents and other interested parties about the surgeries available, preparation, likely outcomes, how to balance surgery with other therapies. We will be looking to the floor for ideas on how to deal with soft food diet regime post surgery espically for teenagers - your input is welcome!

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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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.

11:30 a.m. Dr Paddy Power, Consultant Psychiatrist St Patrick’s Hospital is a specialist in the assessment and management of emerging psychotic symptoms/signs & is developing a detection and monitoring service at St Patrick’s Hospital & runs the young adult programme.  He will present on the developing service and access to the service.

11:50a.m. Larry Deignan, VCFS International Conference 2013 Update.

12:15 p.m. Question & Answer Session.

01:00 p.m. LUNCH.

02:00 p.m. Triona Sweeney, The Children’s University Hospital Temple Street.

02:15 p.m. Dr. Beth Parke - TBC.

03:15 p.m. Amy Ellis – Living with 22q11.

03:30 p.m. Any Other Business.

Professional Child Care will be available!
Please email us to book your place at this event:  twenty.two.q@gmail.com

22q11 Ireland - Proud Host to VCFS Educational Foundation International Conference 2013.

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What a great day we had! Despite a heavy early morning shower of rain, the day brightened up in every sense of the word, with plenty of sunshine, fun, food, chat, and revelry.  As our Photo Gallery of the day will testify.

Right: Group Photo - Clock to view larger image.

The Association would like to extend a big thanks to Newbridge Scouts for their wonderful help on the day, and Coillte for the use of the beautiful Donadea Forest Park. But most of all we would like to thank all those who came on the day, children, teens, parents, grandparents, friends and trojan helpers, all who helped make it such a great success. Thanks a mill!

View the Photo Gallery.

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There are some very good videos on feeding your baby available from the American Cleft Palate Foundation, and they have also very kindly sent us several DVDs.

The videos are evenly paced. They cover various options for feeding in bite size pieces. The videos that will be of particular interest to Irish parents are those on the Enfamil nurser from Mead Johnson (which has the same mechanism as the MAM), and the Haberman Feeder (more recently referred to as Special Needs feeder).

While the videos are helpful, parents should contact their Cleft co-ordinator or team Speech and Language Therapist if feeding is problematic. It should also be said there are very specific cases such as Pierre Robin that will require direct consultation with the team.

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Location: Donadea Forest Park, County Kildare. (follow link for location map)

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UPDATE, 14 June: Confirmations sent to everybody that has booked. If you have sent a booking and have not received a confirmation please contact the Association at 087 1319803 or email info@cleft.ie

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The Cleft Lip and Palate Association of Ireland, in conjunction with the Newbridge Scouts, are delighted to announce that its seventh family fun day will be held on Saturday, 18th June. This year we are planning to spend the day at Donadea Forest Park, a little known jewel in County Kildare. It is located 8 kilometers south of Kilcock on the R407 to Naas and is also accessible via the R407 about 13 kilometers north of Naas on the Kilcock Road.

Below: Family Day, June 2009.

The day will start at 10am with registration. At 10:30 we will break up into groups for age appropriate activities – buggy walk around the lake for under 6’s, venture challenge for teenagers+, orienteering for ages 6 to 12 and grown-ups, and a sedentary sit down at base camp for anybody else!

We will have a picnic (in the marquee if needs be) around 12:30. Families should bring a light lunch to supplement a barbecue which is being organised. Tea and coffee can be purchased from the Park’s coffee shop, or bring a flask. The Scouts are organising a range of activities for the afternoon. As usual dress for all weathers. We will have our annual raffle too which has proved to be a good success in previous years. Let us know if you can supply a raffle prize.

Please find attached booking form and information for this year’s Family Fun Day. Please complete and post to CLAPAI, c/o 4 Wolverton Glen, Dalkey, County Dublin, or complete a softcopy and send to info@cleft.ie. Closing date for replies is Friday, 10th June.

It is an ideal opportunity to meet up, chat and have fun. I’d like to take this opportunity to thank Aine Doyle, committee member and Paul Murphy Newbridge Scouts for all their work in organising this year’s event.
(Georgina Wade)

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

Park Entrance (Google Street View):

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Mini-marathon time 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, 6th June.

As ever, we need YOUR help. Sponsorship cards and T-shirts can be arranged by contacting Anne Gilsenan at 087 131 9803, 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.

You can register online at www.florawomensminimarathon.ie.
Closing Date: 27th April 2011, 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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Are you the parent of a child born with a cleft?  Are you new to cleft treatment? Is your child starting a new phase of treatment?

If the answer to any of these is YES, please join us for ‘Parents Evening’, Wednesday, 9th March, in the Aisling Hotel.  We will be there from 7:30pm to about 10.00pm.  Drop in when you can.

Parents’ evenings are informal occasions that allow parents of children born with cleft to meet and share experiences. It can be encouraging for parents to meet with other parents who have children of the same age or a little older.  It is also good to share tips with parents who have younger children.  The evening is not geared for children as such, but newborns are more than welcome – we know that getting babysitters in the early days is not always possible.  We look forward to seeing you over a cup of tea!

All you have to do is turn up on the night!

Venue:
The Best Western Aisling Hotel is in Parkgate Street in Dublin.  It is on the Red Line Luas (Hueston stop) and is in view of Huestson station for mainline rail.  Parking is available in the hotel grounds at €2.00 per hour.  Drivers need to approach the hotel from Wolfe Tone Quay  - there is a left turn approximately 100 yards down the quay; it is for local access including the hotel. (see map below)

Association Contact Details

Email: info@cleft.ie

Facebook: http://www.facebook.com/group.php?gid=2424256199

Phone (087) 1319803

It would be helpful if you could contact us in advance so we can ensure we have the appropriate amount of room booked  - many thanks.   Admission is free.

<
View Aisling Hotel in a larger map

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Hi and a belated Happy New Year! Just to keep you up to date, the committee met on the 18th January for its first 2011 meeting.  As usual, we had a full agenda.  This year promises to be as busy, if not busier, than last year.  We plan to continue with our series of informal parents evenings - the next meeting is on the 9th March in the Aisling Hotel. Our Annual General Meeting and Information Evening will be held in May, and our annual Family Day will be on the 18th June.

This year the organisation celebrates 30 years.  We plan to mark the occasion with a musical fund raiser in the Autumn.  In addition to our organised events, we are planning to add to our leaflet series, collate another 300 maternity packs, complete a collaborative project with the medical profession and perhaps start another.  In the meantime we continue to work with maternity hospitals and team co-ordinators supporting new families.

There is more, but that’s enough for now!  We look forward to your ongoing support and to seeing you throughout the year.

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10 Euro per pack of 10 cards (includes postage),
or
20 Euro per pack of 25 cards (includes postage).

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 prompt delivery!

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[8 July] Photos! All the photos from the Family Day are now available to view on the Association’s flickr page. The photos are are not available for public viewing, so in order to view the photos use this Guest Pass. A selection will be added to the Gallery here on the website in due course.

Right: Group Photo, Family Day, Causey Farm. (click for larger image)

A wonderful Family Day has been had at Causey Farm near Athboy, Co. Meath.  With some 27 families present in blissful sunshine, the highlight had to be the bog jumping. The kids had such fun! And I did see some parents daring to take that leap, so as not to be outdone by their children! This video is made available thanks to Dallan O’Reilly.  Now you will know what ‘Bog Jumping’ is all about! Photos will follow soon, watch this space!

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A big THANK YOU to all the women that ran, jogged and walked the mini-marathon in aid of CLAPAI, and thank you to all who sponsored them.  It was probably one of the wettest marathon days so far, but the energy and the enthusiasm shown by everyone made the day seem brighter than it should have been.  This year, as we have had an extra participant - see photo - we are glad to report that the CLAPAI Teddy made it all the way around the 10k circuit. When he got home he had a nice bowl of warm milk and honey and a good long rest!  p.s. please send us your photos for the photo gallery. (Click thumbnail above for larger image)

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Location: Causey Farm, Co. Meath.

The Cleft Lip and Palate Association of Ireland is delighted to announce that its sixth family fun day will be held on Saturday, 19th June.  This year we are planning to spend the day at Causey farm, which offers both indoor and outdoor activites.  It is located between Trim and Navan, County Meath (see www.causey.ie).

Below: Family Day, June 2009.

The day will start at 10 a.m. with registration.  At 10:30 we will break up into groups and take a tour of the farm. Buggies can get around but be prepared for a bit of rough terrain in places. The highlight of the morning is likely to be our ‘bog jumping’ event.  Our teenage and young adult group will lead the way and show us just how much bog they can soak up!  Everybody will get an opportunity to try this out, even the grown ups.  It is important to bring a change of clothes, a black bag for the wet stuff and some wipes to clear off at least some of the bog before lunch!

After the tour of the farm we will have a picnic (indoor if needed).  Families should bring their own food but we will have tea and coffee readily available and a few goodies too!  We will have some fun and activities after lunch including our annual raffle, which has proved to be a good success in the last number of years.

As usual there will be plenty of time to chat and mingle throughout the day.  Please check here for updates. Regarding costs, there is no charge for attending the event but we are hoping to make the event self financing by runnig the raffle and taking donations on the day. For security reasons we must have a completed booking form if you want to come along – see below. We look forward to seeing you for another great family day, hail or shine!

BOOKING FORM

Please complete the attached booking form and either post hard copy to CLAPAI, c/o 4 Wolverton Glen Dalkey, Co. Dublin, or send soft copy to info@cleft.ie.

Closing date for replies is Wednesday, 16th June. If for any reason you do not get a confirmation of your booking from us, please contact us at 087 131 9803

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

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

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We are delighted to announce that we will be having our first ever Parents’ Evening in the Mount Errigal Hotel, Letterkenny, County Donegal, on Thursday, 29th April, at 8pm.

This is an informal evening for parents, where they will have the opportunity to find out more about the Association and hear other parents’ experiences, while sharing their own over a cup of tea or coffee.

We would appreciate an e-mail (info@cleft.ie), text or call (087 1319803) in advance so that we have an idea of likely numbers attending.

Admission is free, so please do come along.

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Contents:

AGM & Information Evening, 15 April - Donegal Meeting - Family Day - Focus Group - Maternity Matters - Preparing for School - SLT Resource Pack - Report on 11th International Congress for Cleft Lip and Palate & Related Craniofacial Anomalies - Children’s Section

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

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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. (Location Map below).

The Information Evening theme is “SPEECH AND HEARING“.

Following our successful event last year, ‘Dental Care All the Way’, this year we are concentrating on Speech and Hearing. We will be looking at each area separately and where they overlap. We are delighted to have three excellent speakers for the event.

• Nicole Prenderville, Senior Speech and Language Therapist, Our Lady’s Children’s Hospital,  Crumlin.
• Rob Wormald, Senior Ear Nose and Throat Registrar, Children’s University Hospital, Temple Street.
• Julianne Gillen, Community Resource and Access Officer, DeafHear.ie

The information evening is aimed at parents, but will also be of interest to adults born with cleft or medical personnel working in this area.  Carers or close relations are also welcome.  While admission is free, we would appreciate an email, text or call in advance, so that we have an idea of likely numbers attending.

Location Map:
View Louis Fitzgerald Hotel in a larger map

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