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CleftPALS Australia Inc's National AGM

July 3rd and 4th, 2009

 Sydney, NSW

my version of the weekend - Second Day - Saturday Part 1.

Getting there | First Day | Second Day Pt 1 | Second Day Pt 2

 

So now we wake up to Saturday.  Sometimes there are a few sore heads but this year it doesn't seem to be the case, especially in our home - we all went to bed fairly early.  I am usually so dead-tired by the end of Fridays that I can't wait to hit the hay.  I'm not much of a partier on the Friday nights as a rule, because I can't keep awake LOL.  My behaviour was not altered with the family there.  I still went to bed really early after a nice hot shower!

On Saturday I chose to drive us to the Speaker's Day location at Naamaroo Conference Centre.  We stopped along the way (a few times) as I wanted to get a little something else for Marie as she had resigned from the Treasurer's role and after such an amazing job I wanted that to be rewarded.  I already had a box of chocs so I thought of flowers then reconsidered - how would she get them on the plane the next day?  So I killed two birds with but one stone - I got a card with a pretty bunch of flowers on the front - and we all signed it to Marie.  Lovely!

Then I set my computer up again for another day of endless typing!  I actually took 14 pages of notes for the speaker day and know I missed chunks as I got so engrossed in the presentations that I forgot to type at times.. always a hazard!  :)  The speakers were really great. 

 

First there was Dr McGlynn who spoke about his connection with Interplast Australia as a Plastic and Reconstructive Surgeon.  I'll be honest, I started off wishing he'd been there to talk about his work here in Australia rather than off shore but it was such an incredible presentation and so informative about the situation overseas that I came away with a huge respect for the many Doctors, Nurses and volunteers that give so much of their time to help those far less fortunate than our kids are here in Australia.  We are so lucky to have access to such great resources, even if it doesn't feel like we are at times!   I saw images and heard stories of how children my son's age now (around 13) who still had clefts unrepaired.  My boy got his surgery when he needed it and although he's had battles along the way for speech etc, he is far better off than the kids in other countries.  He was at the presentation and although much of it went over his head, I know that he realises that living in Australia has given him a better start in life than many of the children he saw on the screen that day.  Dr McGlynn had the right amount of humour to interject in his story to keep the audience alert and appreciative of his work.  Very Impressive!

Next we had Mick Cannon - our wayward roomie who wasn't moving in with us until later that night.  Mick is the Director of Pierre Robin Australia http://www.pierrerobin.org.au/

This was a delightful story where Mick was honest about his, his wife, Jacinta, and their son, Balin's, journey with PRS.  Mick is an engaging speaker who speaks from the heart.  The information he provided, along with videos of his son's operations, was really valuable and well appreciated by the group attending.  We all left with a far greater insight into PRS and how it might occur, what procedures children go through such as Jaw Distraction,  his sleep apnoea, his breathing difficulties and his feeding problems.  Such a lot our children go through, eh!? 

The third speaker was Debbie Brewer, a Scientific Communications Officer who went through the research currently being carried out into the causes of Cleft Lip and Palate and Craniofacial disorders.  While I won't pretend to understand everything Debbie said she was clear enough to point out that there is a distinct link between a 'disruption' of a certain gene at the start of the development process that has a distinct effect on the facial formation at 6 - 8 weeks gestation.  What this information can do to help prevent future cleft lip and palates was not made clear - or not made clear to me who was noting the day. If anyone else recalls, I'd love to hear from you and amend this part. 

 

Then we held the AGM which is only a small portion of the whole weekend although the weekend is actually referred to as the AGM weekend - go figure!

The Committee was formed as:

President - Ros Currey - NSW

Vice President - Laurie Woods - Vic

Secretary - Leanne Mitton - SA

Treasurer - Sherrie Jaffray - Tas

General members - Neeva Stephens - WA, Marie Alabakov - Vic, Celia Reader - Tas. 

We still need another representative from WA, NSW and here in SA (anyone.. anyone??)

 

Danielle Atkinson then spoke about a research paper she was working on and asking those present to assist her with.  She is a 4th year Speech Pathology Student at the University of Sydney.

 

Then we stopped for lunch... Phew!

 

next .. the second half of speaker's Day....

Getting there | First Day | Second Day Pt 1 | Second Day Pt 2

 

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