About Us
CHARGE Syndrome Australasia was established in 1994 and is the only volunteer not-for-profit support group dedicated to improving the lives of individuals with CHARGE syndrome, in Australasia.
CHARGE syndrome is a complex syndrome of multi sensory impairments. Individuals have impaired hearing, vision, smell, taste, touch, proprioception and inner ear balance. Multiple disciplines are involved long term in the lives of these individuals; from medical intervention to communication strategies, sensory integration, behaviour management, therapy and education support. Unfortunately for families, many of our health and educational professionals do not fully understand CHARGE syndrome and the complexities of multi sensory impairment.
As a not for profit, registered charity, we rely heavily on donations, fundraising, grants and sponsorship to support our aims and activities. Please consider donating to us so that we can continue to inform, connect and inspire our community and raise awareness of CHARGE syndrome.
Our strategy 2022 to 2025
Vision
People with CHARGE syndrome reach their potential and thrive in inclusive and supportive communities.
Our mission
Connect our community so that we inspire and learn from each other, provide a gateway to information and resources, and grow a network of local expertise.
Inform, Connect, Inspire
Our purpose
● Connect: Connect our community to each other and to expertise
● Inform: Be a gateway to information and grow local experts
● Inspire: share our journey and learn from each other.
● Advocacy: Be a voice for our community and influence change
● Governance: Operate efficiently, be sustainable and continuously improve
Core priorities
Connect: Connect our community to each other and to expertise
To engage our community through activities and events which are affordable, accessible and relevant
Prevent people from feeling isolated
Inform: Be a gateway to information and grow local experts
To provide activities, events and resources which are evidence based, accessible and affordable, and which meet the needs of our community
To increase the profile of CHARGE syndrome in medical, allied health and educational professionals and grow local expertise
Inspire: share our journey and learn from each other
By sharing tips and stories, people are inspired to try new things, tackle challenges in different ways
Advocacy: Be a voice for our community to inform and influence change
To represent the voices of the Australasian CHARGE syndrome community
To contribute to discussions which will inform and influence change and create better outcomes
To foster strong collaborations and partnerships with stakeholders and change influencers
Governance: Operate efficiently, be sustainable and continuously improve
To operate in an environment of best NFP practice and governance
To be financially stable and sustainable
To maintain a capable, diverse and active board
Values
Respect – We treat people with dignity
Integrity – We act responsibly and are accountable to our members
Teamwork – We value the contribution of everyone: members, Board, volunteers, supporters and consumer organisations
Excellence - We strive for excellence and quality in everything we do
Join us!
We are looking for people with a range of skills and experience in:
Accounting & finance
Not for profit experience
Business development
Communications and digital marketing
Stakeholder & community engagement
Fundraising
We are calling for 9 Director positions for the upcoming Annual General Meeting in November 2024. Nominations are accepted until 23 October. Position description and how to nominate details are available on our Join the Board page.