If you had a dollar for every time you had to explain Angelman Syndrome, no doubt you could fund prestige research labs across the globe. Diagnosis of Angelman Syndrome are often delayed – stories of diagnosis as adults are still common. We suspect a huge number of cases of AS still remain undiagnosed; currently classified as Cerebral Palsy, Autism or unknown intellectual impairment or seizure disorders.
Raising awareness means;
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Medical professionals think of Angelman Syndrome when trying to reach a diagnosis
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Families have access to concise information to plan for their future
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Networks with like minded families can be formed
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Therapists can tailor plans for learning
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Statistics on diagnosis rates are up to date
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The voice of patients and their families with common needs are heard
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How you can help raise awareness
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Tell someone your story, if you want assistance in contacting the media we have templates and a media liasion officer you can speak with.
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Hold a SpeakOutforAS event;
SpeakOut4AS was born in the US from an idea from 8yo Gina Guagliardo, friend to Angelman child Ainsley Evans. Kids for Good then took the idea and transformed it into an event that can be held anywhere to advocate for children with AS. A number of events have been held in Australian schools already! More info here...
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Attend local or regional disability events, hold a stall or talk to a crowd about AS, we can provide the support you need and have a pullup banner and brochures for use
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Create a webpage, a facebook page or a myspace page, a blog some examples are;
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