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WINGS FOR TYNAN
Story
I will be taking part in the Brisbane Marathon Festival 2018 to raise awareness for Angelman Syndrome.
I have chosen F.A.S.T. ( Foundation for Angelman Syndrome Theraupitcs Australia) as our charity; they are an organisation dedicated to improving the quality of life for families and individuals living with this rare disease and hopefully one day there will be a cure!
Our son Tynan has Angelman Syndrome, Angelman Syndrome (AS) is a rare neuro-genetic disorder affecting about 1 in 20,000 people. It is characterized by severe intellectual impairment, lack of speech, seizures, severe sleep disturbance, movement and balance issues, and numerous other features.
" Living with AS brings some hurdles most of you will not encounter, such as having a conversation with your child- we may never be able to verbally converse with tynan without the need of communication aids etc.
He is a smart little boy who is so loved by everyone he meets. He brings joy and mischief to our lives. But it is a dream for us one day he may be able to verbally talk with us"
This August, I'm going to be sweating it out and doing our best to complete a gruelling course, but in doing so we will be making our run count! I am very honoured to be a part of this amazing race and helping a great cause, and really appreciate your support in this endeavour.
All donations to FAST go directly to funding research and
ALL donations you give go directly to charity, so click on DONATE NOW!
Thank you for your support and helping to make a difference!
Foundation for Angelman Syndrome Therapeutics Australia Limited
The Foundation for Angelman Syndrome Therapeutics Australia (or FAST Australia) is an organisation of families and professionals dedicated to assisting individuals living with Angelman Syndrome to realise their full potential and quality of life through funding research, education, and advocacy. Our focus is treatments that will improve the symptoms of Angelman syndrome and ultimately research that will provide a cure.
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