A tribute to Dame Cecily Pickerill of Silverstream

All are welcome to the launch of this book about her pioneering and her work for New Zealand children born with cleft lip and palate. The tributes are written by many of her patients or families and have been compiled by Beryl Harris.

Friday 5th December 2014 • 5.00 – 6.00pm Rotary Lounge, Upper Hutt City Library

Profits will help support Gillies McIndoe Research Institute, Cleft New Zealand and Interplast International

Available for Sale at Paper Plus RRP $49.95

As part of Cleft Awareness Day 2014, we have a message to share with the world, to all those who are expecting a baby born with a cleft: Don’t be afraid. Check out the video now by clicking above or at http://www.youtube.com/watch?v=BcX5rjRlGS8

In 2013, Cleft New Zealand held New Zealand’s first ever awareness day for cleft lip and palate – New Zealand’s most common condition not able to be fixed in a single procedure, yet is still one of the least talked about conditions.

Awareness Day in 2013 was a success with events held in Auckland, Tauranga, Napier and Christchurch. In 2014, we want to repeat that effort, all around the country with BBQs and awareness spanning the nation.

Cleft New Zealand’s team have now set the date for 2014 Cleft Awareness Day.

2014 Cleft Awareness Day is Saturday 8 November-Sunday 9 November 2014.

Want to do something cool and a bit different for 2014 Cleft Awareness Day? We love hearing new ideas. Please get in touch and let us know what you’d like to do, and what we can do to help it become a reality.

Venue Information, dates and times:

Auckland – Cornwall Park BBQ (wood) area, 11am-2pm Sat 8 November **FREE Sausage Sizzle for Cleft NZ members at this location**

Venue map: http://www.cornwallpark.co.nz/flash/map.html

Hamilton – The Warehouse Hillcrest, 9am-2pm Sun 9 November

Wellington – Bunnings Warehouse, Naenae, 9am-3pm Sun 9 November

Christchurch – South Hagley Park, Cnr Deans Ave & Riccarton Ave, 11am-3pm Sat 8 November **FREE Sausage Sizzle for Cleft NZ members at this location**

Please note: Due to a protest march in Christchurch on Sat 8 November near the location of Cleft Awareness Day, please only park in the area specified on the map below. The protest will terminate in North Hagley Park NOT South Hagley where our event is located.

Helen Martin (Cleft Co-ordinator at Dunedin Hospital) is in the process of putting together a leaflet about the Dunedin cleft service to give to new families. She wants to know what information YOU as stakeholders would find useful in a leaflet that introduces you to cleft services in a region. If you have thoughts, please email Helen at oral.health@otago.ac.nz.

Anybody from anywhere in the world can feel free to send suggestions, not just those in the Dunedin catchment area.

Quality of Care and outcomes in children with Cleft Lip and/or palate – Health Research Council project funded for 48 months ($1M)

Many of you will have heard Dr John Thompson speak at a couple of our AGMs. Dr Thompson is a highly respected Senior Research Fellow in Paediatrics at Auckland University. He has tirelessly advocated for funding into Cleft Lip and Palate study and in June, he received the fantastic news that the Health Research Council (HRC) have granted him the funding to proceed with this vital project.

This study has two main objectives in relation to cleft lip and palate (CLP). Firstly it will investigate the health care delivery pathways from the time of diagnosis to the primary surgery for children with a cleft lip and/or palate and their families. This will ensure that CLP patients are receiving health delivery to the standard expected and required. Secondly it will provide the first consistently collected outcome data in relation to cleft lip and palate in New Zealand, including surgical outcomes, speech, dental care and importantly quality of life. This data will be compared to a parallel study in Australia, as well as to data from the UK to determine how cleft lip and palate patients in New Zealand fare compared to their contemporaries worldwide. This will allow any deficiencies to be identified and processes put in place to ensure improved outcomes in the future.

Cleft NZ is thrilled about this significant development and grateful to John for securing this project which will have an extremely positive impact on the lives of Cleft affected children and their families in New Zealand in the future. Grants of this size and nature do not come easily or quickly. We are extremely lucky to have John and a number of other well respected health professionals who endorsed this proposal in our corner. Our thanks goes to all of them and also to the HRC for having the vision to support this project.

You asked for it, and we delivered.

Cleft New Zealand is coming to visit you in Dunedin and Southland this July.

Cleft NZ’s CEO, Kenny Ardouin, and other members of the Cleft New Zealand team are coming to Dunedin and Southland to introduce ourselves in person to families and to share information about the latest news in cleft care in New Zealand and around the globe as well as share resources to make sure that families have all the information available to them regardless of where in the country they may reside.

Cleft NZ will be meeting with families in an informal coffee group setting at the times listed below. In addition, Cleft NZ will be talking with hospitals and medical teams in both Dunedin and Invercargill on these days as well as lecturing to University of Otago students who will form part of the next generation of cleft care professionals.

In addition, a small number of one on one appointments are available with Cleft NZ staff on these days – if you would like to make an appointment to discuss you/your child’s care, please email kenny@cleft.org.nz as soon as possible to make an appointment.

Coffee Groups

Dunedin – Monday 7 July 12:30pm, With Sugar Cafe, Stuart Street, Dunedin

Invercargill – Tuesday 8 July 11:00am, Starbucks Cafe, Esk Street, Invercargill

**PLEASE RSVP IF YOU WISH TO ATTEND THE COFFEE GROUPS BY EMAILING kenny@cleft.org.nz**

We hope to see you there!

The team at Cleft New Zealand

It is with regret that I announce that Cleft New Zealand has received a letter of resignation from Davina Plummer. Davina has been our Bay of Plenty co-ordinator for a number of years, and played an integral role in setting up the Cleft NZ Facebook community.

She has helped many families over the years in the Bay of Plenty region and further afield. Cleft New Zealand has greatly appreciated having Davina as part of the team. Davina is leaving us to take on a new role externally. Thank you for your contribution Davina; you will be missed.

Kenny Ardouin will temporarily oversee the Bay of Plenty area until such time as a new Bay of Plenty Co-ordinator is recruited. People in the Bay of Plenty seeking support can email kenny@cleft.org.nz or phone 0800 425 338.

The 2014 Annual General Meeting is coming!

This is your opportunity to have your say about where Cleft New Zealand should focus its attention and to hear more about what we’ve been up to over the last year, as well as some of the latest information about what’s going on with cleft care around the world.

Guest Speaker: Maeve Morrison, Speech-Language Therapist, Auckland Cleft Team

Maeve Morrison attends a regular seminar with other SLT professionals and leaders in her field in which a lot of work is done on assessment, intervention, how the cleft team SLT works with the local SLT and how they then become part of the cleft team for your child. She’s keen to share this information with us and we are very lucky to have her present. She will also share handy tips for speech language therapy for children with cleft.

When: Wednesday 21 May 7.30pm

Where: The Parenting Place, 300 Great South Road, Greenlane, Auckland

RSVP: info@cleft.org.nz; 0800 425 338

Can’t make it to Auckland on the day? For the first time ever, in 2014 the AGM will stream live on YouTube and you will be able to ask questions live and interact with us. Simply visit this page on the day and click the video below to watch live!

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) Watch on YouTube here | Follow on Google

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

Christchurch – Wednesday 02 April 2014

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

Hosted by Juanita. Please RSVP to juanita.mclellan@cleft.org.nz

Auckland – Friday 11 April 2014

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

Hosted by Kylie. Please RSVP to kylie.perry@cleft.org.nz

Hamilton – Saturday 17 May 2014

9:30am – Powells Road, Hamilton

Hosted by Sarah. Please RSVP to sarah.white@cleft.org.nz