Your gift will help us provide much-needed services & support to families affected by Fragile X syndrome.
Fragile X syndrome (FXS) is the leading cause of inherited intellectual disability and single gene cause of autism. It's a lifelong disabling condition requiring early and ongoing intervention by health, medical and educational professionals to ensure people with FXS can achieve their full potential.
FXS and its related disorders affect an estimated 100,000 people across Australia. Each week 1 child is born fully affected by the syndrome, and 20 are born with the potential to pass the syndrome to their own children.
One of the most challenging issues faced by families affected by Fragile X is the lack of awareness of the syndrome at all levels: in the healthcare system, the education system and the community broadly.
Most families who discover they are affected had no prior knowledge or warning at all.
Widespread knowledge of the condition and early intervention are critical:
- early intervention gives better quality of life to children and their families
- early diagnosis allows families to utilise government funding for therapies (BetterStart or NDIS)
- early diagnosis removes the likelihood of a second child being born with FXS to a family
What do we do to support families?
Our goals are to:
- provide support for children and adults with FXS and their families
- promote early detection by educating health professionals and educators about how FXS presents
- promote awareness of Fragile X syndrome
- improve the health and wellbeing of those affected
- lobby government for their needs
We're a non-profit member-based organisation and registered charity.
As we receive no recurrent government funding, and rely on donations, fundraising and membership fees to achieve this.
How will gift be used?
Your gift will be used to support the services we provide:
- Free counselling service
- Websites and publications on Fragile X syndrome
- Workshops and seminars for families, health and education professionals and carers
- Assessment clinics
- Our quarterly newsletter
- Awareness raising
- Family support