The value of the CHARGE community

This year the CHARGE syndrome association is taking a moment to reflect on the last 30 or more years association. It was founded in 1988 by a group of families including mine. We had our first conference in 1994.

Over the years we have supported many families in Australia,NewZealand and south east Asia with recourses and support.

To me being part of the community is an amazing feeling. In our community every one gets your situation and is very supportive. We are like a big family. Every meet up or conference is like a big reunion. We share in the highs and lows. We volunteer our time in different committees.

For me I love being w part of the CHARGE family. I have loved watching it grow from just a few families to the wonderful community we are today. Now every thing is online it is much easier to keep in contact which has been great in the time of COVID. we were able to have video meet ups where even regional families that may not attend our local meet ups can attend. We gave been able to develop and take an amazing online course all about CHARGE syndrome. We have also had support from the worlds top experts and to this day are still learning.

Thanks to all who have got us to where we are today. You are all appreciated and loved very much

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