Although well and truly over most of the hurdles that come with being born with a cleft, Marcus believes that coming into contact with many other people who have facial or other physical irregularities in the course of his career, have helped him see the ‘big picture’.

“The concept of ‘Face It’ seemed to sum up how you have to tackle each stage in life, as parents of a baby, or as a child heading to school, and that it’s far better to do it as positively as you can,” says Marcus.

If you missed the story here is the link. 

Remember that with the right information and support we can Face anything that comes our way.  Cleft NZ offers anyone born with cleft and their family support and information.  If you too would like to share your experiences to help make a difference, you may want to take part in our survey. Find the  link to the survey in the article below this one.  Or you may like to join in our Facebook community.  There is a facebook page for parents and one for young people born with cleft.

Cleft NZ wants to understand about what is important to you. What has worked, what hasn’t, what do you think would make a difference.  We are interested in everyone’s perspectives – people born with cleft, families and friends, professionals working with us.

Please take 10 minutes to fill in this survey, your input is greatly appreciated and will help prioritise what Cleft NZ does next.

We would also like to encourage you to forward this link to others you may know that are either people born with a cleft, other professionals working in the community or extended family and friends who are interested in the outcomes for individuals born with cleft. We want to get as many diverse perspectives as we can to help us fine tune the services available.

Choose an appropriate survey link below and take 10 mins to make your experiences count.

• For people born with Cleft
• For professionals working in the field
• For family and support people
  Thank you we appreciate your time

You are all welcome to attend a Coffee morning at Louise and Henry’s place.

Auckland coffee groups are going to run on the 20th of each month.  EXCEPT for this month .

When:  27th August 2010 from 10am-12 noon.

Please bring a small plate to share.  For the address and to RSVP phone 0800 425 338

For a list of other Coffee groups in NZ

Winning the Volunteer Award has allowed Cleft NZ to spread the word about what we do.  Take a look at Counties Manukau DHB’s magazine.  We are on page 8.  

http://www.cmdhb.org.nz/News_Publications/Newsletters/Connect/2010/connect-jun2010.pdf

At an extravagant award ceremony at St Matthews in the City on Tue 8th June, Susan won the Health and Nutrition Category of the Intrepid Travel Volunteer of the Year Award.  

Susan was overwhelmed to be amongst such amazing volunteers and manage to be one of the 7 recipients. Cleft New Zealand would like to thank Good Magazine, Intrepid Travel, Fujitsu and all the other sponsors of the event. We would also like to thank Honourable Tariana Turia and Te Radar for adding to the sense of occassion – it really made us feel special.

But an an especially big thanks to all of you who voted for Cleft NZ and Susan. It was the voters who made all the difference.

We would like to congratulate Darryl Pascoe from StarJam for winning the overall award. If you would like to subscribe to Good Magazine 20% will be donated to StarJam.  Everyone nominated does amazing work in their communities – a true inspiration.  For Susan the real motivation is the many amazing young people born with cleft that she has the privelge to meet.  How you face your adveristy and rise above the challenges is an inspiration and lesson to us all.

Learn about the recipients

Cleft NZ’s AGM was on May 26th. Thanks to all those who ventured out on yet another rainy, cold night.  Our Executive team has remained the same as last year, if a little reduced.  Find out more about your Exec.

Sandy Cavell – Middlemore Cleft Team Psychologist Intern gave us a great presentation about health psychology and honouring our differences.  Sandy discussed resilience and coping strategies and gave a really great overview of the psychological impacts to both individuals and their families of this difference.  Sandy’s material, eloquent and understanding really made it easy for people to open up and the result was a great conversation.  Facing It really opens up potential.

Some things we learnt:

• Health psychology is to do with the psychological impacts of medical intervention, illness and/or long term disability.
• Sandy’s insights not only help us as individuals and parents, but other members of the cleft team get a clearer idea of the impact of their work. 
• Everyone is different.  But denial and avoidance is not a healthy option. 

This study has gone through ethics approval and will among other things look at

• Incidence of cleft – with different variables like ethnicity
• Burden of care – which means the number of visits and surgeries required in the first 5 years
• Speech Language Assessment of all 5 year olds  (a modified GossPass assesment if you are interested)
• An orthodontic assessment of dental arch for 9 year olds (Goslon yardstick and Bauru Index)
• An assessment of the quality of the alveolar bone graft
• And an initial assessment from an oral health perspective on quality of life outcomes.

Cleft NZ would like to thank Peter Fowler and all the cleft units for taking the initiative to run this research. It will help to give a clear picture of what happens for our children and how this impacts upon our lives as families generally. It is a great way to assess how we are doing and the outcomes of the interventions we have.

If you have recently moved and would like to participate, please contact your closest Cleft Unit to update your details. It is a chance to use our experience to help our professionals do an even better job.

You are all welcome to a coffee group at Nikki’s house in Manurewa. 
Thanks Nikki – our families out your way wanted something local!!

WHEN:   Tuesday 8th June, 10am-12 noon.  Ring 0800 425 338 for the address

Just bring a small plate to share and your children.  We hope to see you there.

The AGM of Cleft New Zealand Inc. will be held on Wednesday 26th May 2010 at 7.30pm at The Parenting Place – 300 Great South Road, Greenlane, Auckland.

Remember we have a great guest speaker in Sandy Cavell (Psychologist Intern – Cleft Team, Middlemore) who will be talking about her role on the team & how this can help to support & empower families.

If you want to come along and haven’t RSVP’d, please contact us on either info@cleft.org.nz or 0800 4 CLEFT (0800 425 338) – it helps for seating & catering.
There were no Notices of Motion or General Business items received. The following Nominations were received for positions as Officers and/or the Executive.
John Frear – Chairperson ; Stephen Selwood – Deputy Chairperson ; Ian Pallas – Treasurer/Secretary ; Susan Frear ; Elspeth Lamb
We look forward to seeing you next Wednesday 26th.

John Frear

Chairperson, Cleft New Zealand Inc