"If you could ask them one thing, what would it be?
Angelman Syndrome (often abbreviated AS) is a severe neurological disorder characterized by profound developmental delays, problems with motor coordination (ataxia) and balance, and epilepsy. Individuals with AS do not develop functional speech. Individuals with Angelman Syndrome tend to have a happy demeanor, characterized by frequent laughing, smiling and excitability. Angelman Syndrome is a genetic-based disorder resulting from the loss of function of the Ube3a gene in the brain. Loss of Ube3a prevents neurons from functioning correctly, leading to deficits in learning and memory. Importantly, loss of UBE3A does not appear to affect neuronal development, indicating that neurons could function normally if UBE3A function is restored.”
– The Foundation for Angelman Syndrome Therapeutics
The problem The Foundation for Angelman Syndrome Therapeutics found was that no matter how detailed they tried to be, it was just too difficult to explain the diversity of people with Angelman Syndrome. This means many go undiagnosed or even worse, misdiagnosed.
So we set about finding a way to communicate the unique characteristics of the condition, raising awareness and helping the organisation fund a therapeutic.
We crossed an entire continent meeting 25 families from Perth to Melbourne, Hobart to Cairnes, talking with parents and siblings to gather their first hand experiences with the condition.
From our encounters we produced a suite of video content from the emotional to informational including; An overview of the condition, clinical characteristics to look out for, a history of the organisation and much more.
Over 40 hours of observational footage was gathered which is added to the organisations research archive.
The videos were released online through Youtube, facebook and other social channels. They were also used at medical conferences, gala events, charity fundraisers and any place that could help F.A.S.T find a therapeutic.
The success of the campaign can be found through the thousands of comments on Youtube and FAST forums. The passionate were an overwhelming confirmation we had achieved our goal.