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Pocket ChAngel Challenge
Nicole Pusic
Pocket ChAngel Challenge
Story
On the 25th January 2019, Cleo my youngest Daughter was diagnosed with Angelman Syndrome (AS). It is a rare genetic disease that effects 1 - 15,000 people. Cleo is roughly 1 of 500 people diagnose with AS in Australia. Which means statistically there is around 1000 Australians who have not yet been diagnosed or misdiagnosed.
So far the Foundation for Angelman Syndrome Therapeutics (FAST) has been able to give Australian AS families access:
- To life-changing therapies, with four clinical trials announced at the FAST Conference November 2019. THIS COULD BE IT, WE COULD POSSIBLY FIND A CURE THIS YEAR!
- Create, maintain and promote the Global Registry, that collect and manages the largest repository of Angelman syndrome data to allow for analysis of disease progression, natural history and patient-reported outcomes that can be measured to evaluate therapeutics.
- Fund newborn bloodspot and health economics research projects, for early diagnoses for Australian families
- Generate informative material that education or create awareness throughout medical, pharmaceutical and corporate networks
- Building a bigger and more informative Angelman community
International Angelman Day is on Saturday 15th February. To help generate more donations I am raising the bar and asking for your help. Instead of 55 people/families donating, this year I would like to ask 10,000 people/families to donate. Read on once you have picked your jaw off the ground.
My challenge is to get you, 412 of my wonderful and amazing Facebook friends to donate $5… THAT'S IT… $5! Not hard is it! But wait there is more, I then want to see if anyone can beat me, reaching out to your network to donate $5 and get over 100 people to donate within your network.
THIS CHALLENGE WILL CLOSE ON MARCH 15. The person with the most donations will get a $500 dinner voucher at their favourite restaurant in their home city.
How do you accept the challenge:
1. Donate $5
2. Click on share and post to your social media pages, highlight to be help you win they MUST put your name in the message for fundraising page!!
3. Keep promoting the Pocket ChAngel Challenge to get all your friends to participate. Use #pocketchangelchallenge every post to get the word out!
4.All donations with names attached with be tallied on Sunday 1 March, and the winner will be announced!! Remember the person with the most people donations wins!!
Regular post with the leader board will be posted on my own social media pages
www.facebook.com/nicole.pusic
www.instagram.com/mrspusic
Who’s putting their hand up?
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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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