Keep an eye on this page for details of our family day which will be posted very soon! Excitement is building!

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A charity night fundraiser is being held in aid of the Cleft Lip and Palate Association of Ireland in St. Maur’s GAA Club, Rush, County Dublin, on Friday the 5th April. Doors open at 8.30pm. There will be both a live band (The Hitmen) and a DJ present.

For tickets please contact either
Eoin Boyle on 086 8599273, or
Colm Leonard on 086 8092581

Tickets cost €10, and this is a ticket-only event.

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Re. Marathon, marathon-relay, half marathon and 6 mile run on 5th May 2013 in and around Limerick city.

If participants could fundraise on behalf of the Cleft Lip and Palate Association of Ireland your efforts can go a long way towards assisting
(1) the funding, purchase, installation and fit out of the children’s and adolescents’ waiting room in the National Maxillofacial Centre in St James’s Hospital in Dublin, and
(2) the provision of maternity packs and emergency bottle supplies.

We would be most grateful for your efforts towards raising funds for these worthy causes!

You can email me, Anne Gilsenan (Treasurer), at clapai.treasurer@gmail.com, and  I will get back in touch with you to organise t-shirts and sponsorship cards etc.

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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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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.

Right: Click to view larger image

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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Notice is hereby given of the 2013 Annual General Meeting (AGM) of the Cleft Lip and Palate Association of Ireland, to be held on Tuesday, 4th December, at 8.00pm,  at Bewleys Hotel, Newlands Cross, Dublin. The AGM will be followed by an informal get together of parents and carers.

Bewleys Hotel - Location.

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The “Rathangan Runners” who participated in the 2012 Women’s Mini Marathon in order to raise much needed funds on behalf of the Association. Many thanks to Anne O’Brien and her fellow runners (including her son Joe, seen here in front) for their unending support. (click image to see a larger version.)

Let us also add a big congratulations to Michael Sutton who recently completed the Liverpool Tunnel run with all sponsorship going to our Association. Well done Michael and thank you!!!

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Location: Kippure Estate, Wicklow, near Blessington (20 mins from M50/Tallaght junction).

Our 8th Family Day promises to be another action-packed occasion. Kippure Estate Adventure will be running activities for all ages. For children there are bouncy castles, bouncy slide, face painting, balloon animals and a play area. For older children and adventurous ‘grown ups’ there is archery, climbing with helmets and harnesses, abseiling and a treasure hunt. In an estate of 240 acres, there are plenty of walks too.

We must have final numbers by Wednesday 6th June. Forward family details to info@cleft.ie (family name, address, contact number / email, names of those attending, children’s ages, special needs, transport help).Alternatively, download booking form as follows:

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.

Registration from 9.30 to 10.00am. There is a tuck shop on site selling tea and coffee. As before, bring your own picnic.

We are asking for a donation of €20 per family to help cover costs (payable on the day). We are also looking for prizes for our raffle.

Please pass on the details to families you know who may not be on our mailing list. Georgina

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If you would like one of our Parent Information Packs please contact Sinéad Ní Allúin at 086 8438474 or email nialluin@cleft.ie

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The Spring 2012 Newsletter is now available and can be downloaded below.

Included in this issue:- Anniversary Concert - How it all began - St. James’s New Challenge - March is Cake Sale Month! - Fundraising.

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

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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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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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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)

————————-

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):

View Larger Map

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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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