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Thursday Night Sofa Seminars – April 2014

Posted on Friday, March 21st, 2014

Many people comment that due to logistical reasons they are unable to make it to one of the seminars put on by Cleft New Zealand in any given year. Well, now the whole world can benefit from the comfort of your sofa, TV, iPad etc, as we present our Sofa Seminars over two consecutive Thursdays streaming live to the world via YouTube.

Here”s the details:

Rabbits, Forklifts and Geodes: An Introduction to Cleft Lip and Palate, possible causes and a look at the impact on Quality of Life with Kenny Ardouin. Thursday 03 April 2014 – 19:30-20:30 NZDT (GMT 13) |

It Gets Better: Dealing with Bullying with Kenny Ardouin. Thursday 10 April 2014 – 19:30-20:30 NZST (GMT 12)  |

Coffee Groups Coming Up

Posted on Monday, March 17th, 2014

Christchurch – Wednesday 02 April 2014

10am – Beach Cafe, 16 Beach Road, Waimairi Beach, Christchurch

Hosted by Juanita. Please RSVP to


Auckland – Friday 11 April 2014

10:30am – Barron Road, Greenbay, Auckland.

Hosted by Kylie. Please RSVP to


Hamilton – Saturday 17 May 2014

9:30am – Powells Road, Hamilton

Hosted by Sarah. Please RSVP to


Resignation of Jo Lynch

Posted on Wednesday, February 12th, 2014

It is with regret that I announce that the Board of Cleft New Zealand have received a letter of resignation from Joanne Lynch, effective 10 February 2014, which we have reluctantly accepted. Jo has been a loyal member of the Cleft New Zealand governance team throughout 2013, assisting behind-the-scenes with many of our day to day operations and projects including most recently at our inaugural youth camp.

We would like to take this opportunity to thank Jo for her contribution to the cleft community of New Zealand and wish her all the very best for her future endeavours.

2013: A Year in Review from the CEO

Posted on Saturday, December 21st, 2013

by Kenny Ardouin

Disclaimer: This is a blog post, therefore all views expressed here are my own and do not necessarily reflect those of the organisation as a whole.

What an incredible year 2013 has been. As my first full year in the managerial hotseat it was always bound to be an exciting year, but if you had told me in January that the year was going to be so eventful, I would probably have wondered what planet you came from, but here we are.

January saw me be fortunate enough to meet up with the Chief Executive Officer and the rest of the team at CLAPA (Cleft Lip and Palate Association UK) in London, and it provided the opportunity to establish a strong relationship between the UK and New Zealand in the area of cleft support, with us even exchanging some Herman Friendship Cake on that snowy January day.

February saw the formal arrival of our new Board of Governors and we officially welcomed Jo Lynch, John Hellesoe, Tammy Chau and Rachael Byles to the Cleft New Zealand team. The establishment of this new board is largely responsible for why there have been so many excellent opportunities offered this year, and is led under the stellar stewardship of Louise Ayrey, our Chairperson. I affectionately think of the Board as ‘The Dream Factory’ as they are totally supportive of giving things a go, taking a few risks to see if we can turn ideas and dreams into realities even if we are unsure whether it will pay off in the end or not – as the National Manager, it is a very humbling feeling to have that level of support from your board and to know that you are working with a group of people who share the same aspirations as you do – they say that behind every man is a great woman, and whilst that particular position remains vacant, there is no doubt that there is a great team behind me who I am incredibly grateful to and sincerely enjoy working with.

March typically follows February and 2013 was no exception to this. March saw Louise and I invited to the National Cleft Team meeting at Middlemore Hospital in Auckland, meeting with all the cleft teams from around New Zealand as they discussed best practice, as well as local and international research to ensure that New Zealand is delivering a leading level of cleft lip and palate healthcare regardless of where in New Zealand you may reside. It was fantastic to have the opportunity to see for ourselves the dedication of our teams, and to also have a full appreciation for the challenges that are faced by each region in 2013. I was also fortunate enough to be able to attend the VPI5 conference at Middlemore on the following day also, which was a Cleft Speech-Language Therapists Conference for SLTs from all around Australasia.

April saw the launch of our new quarterly magazine ‘Word of Mouth‘, the newsletter for all those in New Zealand to learn about the latest news in the field of cleft care. Doing the editorial for this has given me a fantastic opportunity to interact with more of our stakeholders and find out a bit more about your lives which has been a really fun experience for me, and something that I look forward to continuing into the future. April also saw Cleft New Zealand become multilingual, which was something that I have always considered very important as it removes the language barrier to accessing our support services. From the launch in April, our services were available in English, French and Samoan, and in 2014 we also plan to add support for Maori speakers and speakers of NZSL (speakers of NZSL can already contact us through the NZ Relay Service).

In May, we had our Annual General Meeting in Auckland at One Tree Hill Kindy. This was our first time in many years of offering the AGM in the daytime and incorporating activities for the whole family. We believe that this was generally very well received and also provided you all with an opportunity to learn about the challenges that a not for profit such as Cleft NZ faces. We also took the opportunity to team up with Deaf Aotearoa and celebrate New Zealand Sign Language Week by offering free NZSL taster classes for our members in Auckland and Christchurch.

June was a month where my own cleft journey reached another station along the journey en route for the final destination of ‘Complete Discharge from All Services’ as I found myself in hospital for surgery for the first time in a number of years. Having my wisdom teeth removed was a good practice run for what is to come next year in my personal journey.

In July, Cleft New Zealand received an invitation to attend a Multicentre Outcomes project for Australasia in Sydney, and I was fortunate enough to be selected to represent families and patients affected by cleft in Australasia which was a huge privilege. This project is really exciting as New Zealand and Australia begin to share data on outcomes of cleft care from a wide variety of fields such as plastic surgery, orthodontics, speech therapy, and perhaps most importantly, quality of life (something which NZ has already started gathering data on). Once this data is available, it will enable cleft care across Australasia to improve, and although we still have a way to go yet, this project is a fantastic start and I really look forward to continuing to hearing about the progress made with this project.

In August and September it may have seen like things were a bit quiet at Cleft NZ HQ, but this could not have been further from the truth – we had three more very exciting projects up our sleeve to complete in 2013 (as well as running the day to day stuff) and so in August and September we had our heads down and were working hard. When you saw us resurface again in October, it was with a bang(er)  (banger = British English for ‘sausage’) as we held our first ever New Zealand Cleft Lip and Palate Awareness Day. Our teams around the country did us proud as they fired up the BBQ selling sausages to the masses on a Saturday morning whilst also handing out free education to the public on the country’s most common condition that is not fixable in a single procedure. Huge thanks to all those who rallied behind this cause, we could not have done it without you.

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November was another busy month for us not only because we were gearing up for a very big event in December but also because we had our famous Christmas Party. This year’s event was held at One Tree Hill in Auckland, and credit has to go to Louise and Rachael who did an amazing job in putting on an awesome fun filled day for all the family with a great turnout, with smiles, superheros, ice-creams and sausage sizzles all round (not necessarily in that order)! I also had an exciting November as I had the awesome opportunity to go and have a chinwag with the nursing team on the Paediatric ward at Hutt Hospital, and I must say, they are doing an excellent job, and families are in very capable hands there. I also managed to catch up with Susan Reay, cleft co-ordinator at Hutt Hospital which was a fantastic opportunity to learn more about how the Hutt system works as well as some of the challenges faced by that system and how they are overcoming those resourcing constraints. Overall, I was impressed with Hutt and families should feel confident that they are receiving a good level of care.

Which only leaves December. I’m not going to lie – the 13th-15th of December was probably the most amazing weekend of my life thus far (and I have had some pretty epic weekends in my time). I have been involved with Cleft New Zealand since September 2005. I’ll save you doing all the maths – I was 14 when I first became involved. One of my long held dreams is for Cleft New Zealand to offer a youth camp for young people affected by cleft lip and palate in New Zealand, as in all honesty, this is something that I would have absolutely loved when I was that age, but sadly at that time, there was nothing in this part of the world. Therefore you can imagine my elation in September when the board gave me the green light to go ahead and try to put one together for a weekend in December. Once all the planning was out of the way, and I stepped foot onto that plane on the morning of Friday 13 December, I enjoyed every minute of it. Everyone naturally seemed quite nervous and a little bit shy when the van turned up on Friday morning, but then to see by the Friday evening everyone giving things a go, talking to each other and feeling relaxed at camp was just one of the most amazing things to witness as I realised at that moment that all the planning had been totally worth it. I found it to be a weekend of different emotions, from absolute sheer terror when I was standing on the top of that flying fox platform realising that I had no choice but to go through with it and jump off the top to set the example for the others despite every cell in my body telling me that I was mad to even contemplate jumping off that platform, but that feeling was soon replaced by one of total elation when I realised that I had pushed myself to do something that I never would have done if I felt I could have gotten out of doing it! I felt a sense of pride and achievement in something that I had previously considered to be a total weakness – and I realise that many of the participants experienced the exact same feelings, and also overcame their fears, with that fear being replaced by a sense of high self esteem and confidence in themselves. Seeing everyone exchanging details with every intention of maintaining those friendships was absolutely fantastic. One of my personal highlights was talking to Carmit Bachar from The Pussycat Dolls, and being a little bit cheeky by asking the question ‘What would your advice be to people who are thinking, “When I grow up, I want to be famous, I want to be a star, I want to be in movies”?’ I turned around to see all the staff and kids on camp cringing at my audacity to ask such a question, but Carmit gave the excellent response that life is not all about being famous, and that the only person who stops you from achieving your dreams is you. On the Friday night, we were also joined via Skype by Nicola Stock from the Cleft Collective at the University of Bristol in the UK to talk about The Psychology of Appearance – this was a fascinating talk full of home-truths. Huge thanks to Nicola and Carmit for taking time out of their very busy schedules to join us. I also would like to thank the following people for making this dream into a reality – we could not have done it without you – the entire Cleft NZ board, Susan Frear, Tammy Chau, Alex Wilkins, Aliza Currie, Ellen McKee, Tessa Starr, all the families who came out for the open day on the Saturday, and most importantly, all the participants who came on camp – you are all amazing, and without you there would have been no camp, so thank you so very much for putting faith in us and joining us at the very first camp – it has been truly heartwarming to hear how much you enjoyed yourselves! I hope that camps are something that Cleft New Zealand as an organisation will continue in the future. I could talk forever about camp (as everyone who has caught up with me for a Christmas drink since has come to discover!) but a picture is worth 1000 words, so check out this 180,000 word essay instead here.

Thank you to everyone who has made 2013 an amazing year, and I really look forward to continuing to work with you all in 2014.

I hope that you all have a safe and enjoyable Christmas and New Year!

Press Release from the Chairperson: Cleft NZ 2013 Youth Camp

Posted on Wednesday, December 18th, 2013

Hi all

I hope the festive season is treating you and your families well. For anyone in hospital or recovering from a procedure, we wish you the quickest of recovery for Xmas.

This year has finished off with a bang for Cleft NZ as we held our first National Cleft NZ Camp for young people affected by Cleft Lip and/or Palate.

First, thanks must go to the wonderful camp participants – without these truly brave and intrepid young people this event would still be a great idea not yet realised. Going on a camp with people you’ve never met, having a number of volunteers and Cleft Team members hovering around you to ensure you were happy with all needs met – it is all pretty intense and yet our group took it all in their stride. Facing challenges, together, with courage and lots of laughter sums it up for me. It made for a really impressive sight for all of us there. We hope that their experience, which we welcome them all to share, will encourage even more participants next time.

This camp has been an aspiration of Kenny’s for many years. It is not luck or coincidence that camp went so well. Kenny had researched, peer reviewed and just worked incredibly hard (and long) to pull this off. The Board at Cleft NZ takes it hat off to him and can comfortably say we were right to let him talk us into it! I will let Kenny fill you in about some of the highlights – his perspective on things, as someone who has had a dream come true, is much more powerful than my own.

I could thank people all day and night but I must thank all the volunteers – Alex, Aliza, Ellen, Tessa and Tammy  - you were invaluable. Also, Rachael, John and Jo – our Board who came and fully participated in activities (some of which scared the daylights out of them) – thank you very much, not just for this event but all the help in 2013. Susan Frear, ex Chair of Cleft NZ must also be thanked whole-heartedly for her support rounding up children to attend. Last but certainly not least, the parents who entrusted your children to us – thank you for loaning us your beautiful, talented and great natured off spring!

We sincerely hope that the kids who came felt that it was well worthwhile. Everyone will have something they will have taken away from the weekend. For me, seeing the participants work as a group after knowing each other for such a short time was amazing.  I was also struck by the mutual respect our young people showed each other and the volunteers.

Without Community Organisational Grants this camp would not have been possible, thanks especially to Waitakere and Manukau COGS for your help, it is hard to put into words what a difference your support makes to an organisation like Cleft NZ

That’s all from me – the pictures which we will put up will say 1,000 words.


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Cleft NZ Chairperson

Cleft NZ set to launch Bottles For Indonesia Programme

Posted on Friday, December 6th, 2013

Cleft New Zealand is set to launch a new international aid programme by Christmas. In response to a plea by Cleft New Zealand’s Indonesian counterpart, CBL Indonesia, we are pleased to announce the launch of a programme that will see special bottles used by children with cleft lip and palate given a second life in a country with a less developed health system than our own.

Many families all around New Zealand use bottles such as the Pigeon bottle, Haberman feeder and Medela bottles in those early months prior to the cleft repair where feeding is difficult. These bottles all have specialised teats which make them ideal for feeding children with a cleft.

Many families in Indonesia do not have access to the bottles, which are generally imported from the United States at a cost that is too high for the average Indonesian family to afford. “We are very fortunate in New Zealand that cleft lip and palate care is funded by the state – a necessity that many other countries sadly cannot afford to deliver for their people. I am very pleased that the cleft community in New Zealand will soon be able to help support those in a country with less resources than our own,” says Cleft New Zealand’s National Manager, Kenny Ardouin. “Over the years, Cleft New Zealand and the New Zealand cleft community have received a lot of support and resources from other international sister organisations, so it is great to be in a position where we can pay it forward to help families in another country who face the same challenges we do. As a country that is comparatively well-advanced in the field of cleft care, I feel that we do have a responsibility to provide assistance to other less developed health systems where possible, particularly countries in our part of the globe such as Indonesia. I am confident that our cleft community here in New Zealand will rally behind the cause by donating their old bottles, helping us get one step closer towards the globalisation of cleft support.”

From 19 December, families will be able to donate their old bottles and teats which will be quality checked, before being sent to CBL Indonesia – the community offering cleft support to Indonesian families, who will then provide them to families affected by cleft lip and palate. For more information on CBL Indonesia, please visit http://cblindonesia.ning.com/ (website is largely in Indonesian). Full information will be provided on the Cleft New Zealand website once the programme launches on December 19th.

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More information, including how to donate your bottles can be found here.

Summer Youth Camp

Posted on Wednesday, December 4th, 2013

Registrations for the 2015 camp on 10-12 April are now closed! We are looking forward to seeing you there!

On 13-15 December 2013, Cleft New Zealand held its first ever youth camp at YMCA Camp Adair in Auckland, New Zealand. This was a fantastic opportunity for young people all around the country to get together in a fun and safe environment and share their experiences, stories, make friends and have a good time.

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A selection of photos is available below and more are available on our Facebook page .

Miss Canada 2014 Contestant Talks About Her Experiences Growing up with a Cleft

Posted on Wednesday, December 4th, 2013

19 Year Old Katie Barrow is representing Newfoundland in the 2014 Miss Canada Globe competition. Katie was born with Cleft Lip and Palate and is serving as an inspiration to girls all around the planet that despite being born with a difference, you are still beautiful – both inside and out.

Read the article from The Western Star here.

In the article Katie talks about her experiences with bullying, how she overcame them, as well as the fantastic experiences that she received on AboutFace’s camps (very similar to our own camp – faceit.org.nz/camp).

Katie is currently studying psychology at Grenfell Campus, Memorial University of Newfoundland and hopes to become a counsellor working with children who are being bullied.

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The Cleft NZ team wishes her all the very best for the competition, and hopes that Katie will continue to raise awareness for the world’s most common birth defect that cannot be fixed in a single operation – you can show your support too simply by liking her Facebook page at .

Cleft NZ Christmas Get-Together: Sunday 24 November 2013

Posted on Tuesday, October 29th, 2013

Please register your interest for this fun event by emailing .

10am-1pm Sunday 24th November at the Massey Ave Kindy in One Tree Hill.

Great indoor and outdoor spaces and a special treat for children big and small.

Sausage Sizzle, Ice-creams and entertainment plus an appearance from that special Christmas guest all the children love!

To mix things casino online up a bit we’ve organised some interactive fun for the Auckland Christmas party this year. The activity is aimed at 3-12 year olds and is great fun but we need to know numbers! It will help with catering too.

Please RSVP to this years Xmas party as soon as you are able. Let us know how many children in your ‘booking’ – it’s for all the children, siblings of cleft children can participate too.

Anyone outside of Auckland who wishes to travel to the Xmas party you are welcome too.

Look forward to hearing if you can make it.

The Team at Cleft NZ

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New Zealand Cleft Awareness Day – Saturday 5 October 2013

Posted on Sunday, September 29th, 2013

Saturday 5 October 2013 is New Zealand Cleft Awareness Day.

Cleft Lip and Palate is New Zealand’s most common developmental condition that can’t be fixed in a single procedure. Yet is it given the level of attention that would be expected? The simple answer to that is no.

We think this is quite sad really, for something so common to largely fall through the gaps (if you’ll pardon the pun) of public knowledge and understanding.

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We are determined to change that. On Saturday 5 October we were in communities around New Zealand raising awareness (and funds by selling sausages). Huge thanks to all those who supported us on the day either financially by donating, buying sausages or by helping us staff the sausage sizzles on the day – we couldn’t have done it without you! We raised about $1,000 on the day which is a great effort!

Check out the photos below from the various locations around New Zealand!