Imagine you were told your child would never speak.
There are so many complex symptoms that accompany Angelman syndrome. When you ask parents or caregivers, the lack of functional speech is the most difficult. You can't simply ask "What's wrong?" "Where does it hurt?" or "How can I help?"
Our focus is treatments that will improve the symptoms of Angelman syndrome and research that will provide a cure.
Assisting timely diagnosis
Angelman syndrome can be misdiagnosed as autism, cerebral palsy or global develeopmental delays.
Text book clinical characteristics are often hard to translate to "real life". Raising awareness into the condition is instrumental in achieving accurate and timely diagnosis, connecting families to a community rich with information and hope as well as providing understanding for pathways to therapeutics.
What does Angelman syndrome "look" like?
This beautiful video illustrates common features and highlights individuality.
The Global Angelman Syndrome Registry is a FAST Australia funded project designed to create new opportunities and gain insight and understanding about Angelman Syndrome, providing an invaluable tool for facilitating research and enabling clinical trial sponsor to quickly identify suitable patients for studies.
The project has been supported by Angelman Syndrome organisations around the world as well as pharmaceutical and research bodies. It has recently been nominated for a social impact award and is the largest global study of its type into Angelman syndrome.
To find out more or to participate visit www.angelmanregistry.info
Australian Rugby League players Damien Cook (South Sydney Rabbitohs), Iosia Soliola (Canberra Raiders), Sam Perrett (retired, Canterbury-Bankstown Bulldogs) and former NRL star and new Rugby Union Western Force recruit Curtis Rona have been using their public profiles to raise much needed awareness into Angelman syndrome.
The well known sports players join other FAST supporters: Golden Globe nominee and Angelman father, Colin Farrell, up and coming Australian actor Jai Courtney and Australian rock legend Brian Mannix.
Increasing awareness helps to connect families and aids in early diagnosis but most importantly helps us to raise funds to achieve our goals.