Every year on the first Tuesday after the American Thanksgiving holiday there is a day called Giving Tuesday. This is where people dig deep and give to a charity of their choice.
This year is the CHARGE syndrome associations first year doing this and so far we have raised close to 2000 dollars.
Some of the money goes towards our biannual conferences,with the next one being in Hobart, Tasmania for the first time. Money is also put towards special projects like our online CHARGE course that is being developed and our outreach and CHARGE assist services.
The association was founded in the late 1980s/early 1990s, with our first confrence in 1994. It was founded by a group of families, mine included, and since then has supported many families. In 2017, I joined the board of directors as the director for New South Wales, because I wanted to help others like me and give back to an organisation that has been part of my life for so long.
I have seen first hand the benefits a conference or even just a small family meet up can have on people. Friendships are made, parents see they are not alone and we also are able to share ideas and thoughts.
The online course being developed aims to teach others about this complex syndrome and is run by us and the University of Tasmania. This will be online and will cover all aspects from medical to education and therapy.
Our outreach helps to connect families and works with the CHARGE champions in each state to connect more families. CHARGE assist helps to support families on the professional scale and can link them to different services.
We are very thankful for the generosity of people who donate. If any of my friends or family want to contribute, please head to http://www.chargesyndrome.org.au and hit donate now.