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November 2018 Cleft New Zealand Inc Newsletter

Welcome to our first newsletter from the new Cleft New Zealand Inc Board. As many of you know, Cleft NZ went through a bit of a rough patch in 2017, and was in danger of winding up operations altogether. Luckily, some great members of our Cleft NZ community have stepped up to keep Cleft NZ operating, as an entirely volunteer- run organisation. We introduce the new Board, later in the newsletter.

Chairperson's Report

2018 has been a busy year, with the Board getting up to speed with how Cleft NZ operates. A lot goes on behind the scenes, such as the sale of arm splints to the DHBs, applying for COGS grants (Community Organisation Grant Scheme) and then ensuring those funds are spent as promised.

We are also trying to get coffee groups back up and running in as many places around the country as possible. If you are interested in hosting a coffee group in your area, please email info@cleft.org.nz. If you decide to "host" in a cafe, Cleft NZ will fund the purchase of 1 hot/cold beverage and 1 snack (muffin or similar) for each adult attendee. We are really keen to get as many of these up and running as possible to ensure that new parents of Cleft babies get all the support that they need. In order to facilitate this, outside the main centres we are looking at running "virtual coffee groups" using video calling to ensure that everyone can participate no matter where they live.

In August, Cleft NZ attended the National Midwifery Conference in Rotorua in order to spread the word about the services that Cleft NZ provides and Lisa Kennedy from our Board gave a talk on her journey with a cleft and as a cleft mother. You can find the youtube link to Lisa's talk on our public facebook page (www.facebook.com/cleftnz). This was a great success and there was an enormous interest from midwives all round the country. We will look to continue to attend events such as this, to continually raise the profile of Cleft NZ around the country

We have also (with the help of a generous benefactor) purchased 25 breast pumps, which are available to be loaned out for free, to cleft mothers throughout New Zealand. Our mission is that we will be able to lend a pump for up to 12 months, to any mother of a cleft child that wants one.

Hopefully you will have noticed in this newsletter, Cleft NZ's brand new logo. This project was started by the previous board and we thought it was a good opportunity to have a fresh start for the organisation as we look to a bigger and brighter future for Cleft NZ going forwards. With this in mind, if you ever have any ideas for events/services, funding or simply want to help organise things, please email us at info@cleft.org.nz, as we would love to hear from you.

Christmas Parties

Christmas Parties are coming up around the country!

Auckland - Sunday 9th December 2pm-4pm, at One Tree Hill Kindergarten. (https://goo.gl/maps/3MRDrAs9bVA2). Please RSVP either on the Facebook event page, or by emailing info@cleft.org.nz. We have booked the services of "Tornado Tammy" , a popular Auckland kids' entertainer.

Christchurch - Cleft NZ member Millie Nathan has kindly offered to host a pre-Christmas BBQ gathering for all our Christchurch members, on Saturday 1st December, 11am-2pm, at her home in Mt Pleasant. Please RSVP to Millie direct on 021 170 7712, she will provide you further address details.

Tauranga - Keep an eye on our Facebook event page, details will be posted very soon!

If you are interested in hosting a Christmas Party in your area, please email info@cleft.org.nz. We can assist with funding to ensure that it is a memorable day for all the families involved.

Blue Book Update

Cleft New Zealand's 'Blue Book' is a resource available to all parents with children born with a cleft lip and / or palate in Aotearoa New Zealand. The book was originally published over thirty years ago, with the most recent update in 2006. We are starting the process of updating the book again. You might have noticed on our Facebook page, that we recently surveyed your ideas about what our revised Blue Book could look like, to best help families who have babies with clefts in the future. A summary of the survey results can be found here. If you have any further comments, please email them to info@cleft.org.nz .

Bottle Drive

Do you have any stashed away cleft lip & palate feeding bottles that you no longer need? Are you wanting to empty the cupboard of clutter?

We are collecting resources to help babies born with CLP in impoverished countries. You can help us by donating:

  • lightly used bottles for cleft palate feeding, such as the Haberman or Pigeon; and
  • new and unused teats to match.

If you would like to help us help some deserving babies and their families, send us an email to: info@cleft.org.nz.

Please note: any bottles provided will be sterilised accordingly. Teats need to be brand new as these cannot be sterilised without degrading the material.

University of Auckland Study

Closing the Knowledge Gap: What Factors May Affect Cleft Lip and Palate?

A gene-environment study of risk factors involved in cleft lip and/or palate by the University of Auckland.

This study aims to gain valuable information which may help determine the possible gene-environmental effects contributing to the diagnosis of Cleft Lip and/or Palate (CL/P). It is important to identify possible risk factors in terms of prevention, recurrence and knowledge of potential causes, which may benefit CL/P affected children and families.

There is substantial research going on around the world into CL/P however there is currently no data available on the genetics of either syndromic or non- syndromic CL/P in New Zealand. This study will use DNA and Parental Questionnaires to identify genetic and environmental risk factors for CL/P

and test plausible gene-environmental interactions. NZ Māori have the highest incidence of isolated cleft palate of any studied indigenous population in the world – so this study is of particular relevance in NZ.

We are collecting information from a family with a baby affected by CL/P (the 'case'), and we are also collecting the same information from a family whose baby is not affected by a CL/P (a randomly selected 'control'). This nationwide study will run for four years, and we hope to begin recruiting participants from the beginning of November 2018. This potentially ground breaking study would not be possible without the generous support of New Zealand families.

This research is being led by Associate Professor John Thompson and Professor Peter Stone from the Departments of Paediatrics: Child Youth and Health, and Obstetrics and Gynaecology at the University of Auckland. The research is funded by the Health Research Council of New Zealand and has the support of Cleft NZ Inc.

Membership Database

We've realised it's been a while since there has been a a "tidy up" of our membership database, and so we are looking at doing this in the coming months, to ensure that we are maintaining contact with those who want to be involved, and no longer contacting those who feel their time with Cleft NZ has come to an end.

Accordingly, if you receive a request, either via Facebook or email (or perhaps both) to confirm your details, we would be grateful if you could do so.

Meet the new Cleft New Zealand Inc Board

Andrew Acton –Adams (Chairperson)

Andrew is a Chartered Accountant and father to 2 children. Andrew's oldest was born with an incomplete bilateral cleft lip and soft palate in 2013. During the early stages, Andrew and Nicky were extremely grateful for the support that Cleft NZ provided and are excited to contribute to the Cleft community going forwards. Andrew and Nicky also coordinate the Coffee Groups in Tauranga and the wider Bay of Plenty region. Andrew can be contacted by email at andrewactonadams@cleft.org.nz

Allison Brown – Secretary

Allison is a stay at home mum to three children. Allison's middle child was born with a bi-lateral cleft lip and palate in 2012. Allison has experienced the cleft services in both Auckland and her native Australia, with particular emphasis on speech therapy (and more speech therapy!). Prior to having children Allison worked as a lawyer in both Australia and London, but is very happy to now call New Zealand home with her kiwi husband. Allison is based in Auckland and can be contacted on Allison@cleft.org.nz or 0800 425 338.

Helen Mataiti

Helen is mum to three grown children. Her son was born in 1999 with a unilateral incomplete cleft lip and sub-mucous palate. He has had three plastic surgeries as well as dental and orthodontic treatment. As a qualified speech and language therapist currently completing doctoral research in early childhood intervention, Helen is interested in the ways families can be involved and empowered in their child's early years. She is also interested in how non-governmental and governmental organisations can work together to deliver quality and effective services for infants, children and families. Helen's current role on the board is focused on coordinating the update of our cleft resource book 'The Blue Book'. She is based in Christchurch and can be contacted on helen.mataiti@cleft.org.nz

Lisa Kennedy

I'm Lisa Kennedy, I was born in the UK with a cleft palate and my three children were also born with cleft palates and Pierre Robins sequence.. We have since been diagnosed with Sticklers Syndrome which affect retina detachments, early onset arthritis, hypermobility, hearing, myopia. I am a DHB midwife and have been teaching midwives and SCBU nurses how to care for cleft babies and how to refer to the Tertiary hospital. I joined the board of Cleft NZ this year and attended the Australasian Cleft Lip and Plate conference in Sydney this year, to represent Cleft NZ. I hope Cleft NZ is able to support you and your whanau on your cleft journey.

Jemma Cookson

I'm a stay-at-home mum to two beautiful children who were both born with a cleft lip & palate. I joined the board in 2018 to help network families in the Otago region and also to contribute back to our wonderful cleft community at large. My children were born with a condition called van der Woude syndrome; so I have a particular interest in genetic causes for cleft lip & palate and supporting families through this. I look forward to getting to know some of you at our Dunedin coffee groups, and sharing our stories in the Facebook support group.

Tracy Harlowe – Facebook Moderator (non Board Member)

Hi there, I’m a mother of three children, west Aucklander and stay at home mum. In my previous life before motherhood I was a Pharmacy Technician and Manager of a community pharmacy, and also gave a lot of my time volunteering for St John Youth as a Division Manager.

Why do I belong to Cleft NZ? My youngest son Ethan was born with a unilaterial right cleft lip & palate and he's now a bubbly and spontaneous 4 year old. I have a huge passion for Cleft NZ and the support via social media I received from all the families during my new experiences dealing with Ethan’s cleft.

So because of this passion and my love of social media, I’m your point of call for anything relating to social media on Facebook. I will keep up to date with the posts, comments and messages.

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