Our Strategic Priorities

Our Purpose

To see children and families living with Usher syndrome love their lives.

Our Mission

To empower the Usher Community through support, connection and knowledge.

Our Values

Tracey Johnston bio


We consistently deliver strength, knowledge and connection to our community when it matters.

Maggie Sandles


We promote a community where everyone is seen and heard.


We act with the highest ethical principles to ensure our community has confidence and trust in who we are and the services we provide.

Tracey Johnston bio


We foster compassion for childen and families by demonstrating empathy, kindness and belonging.

Maggie Sandles


We are leaders in the provision of innovative resources and programs that are accessible to all.


We nourish and care for ourselves and each other so as a team we can create a lasting contribution to our community.

Our Strategic Objectives


We provide meaningful connections between families with similar lived experiences and build their capacity to love their lives.


We improve outcomes for families by driving psychosocial research and developing resources for families, as well as health, education and disability professionals.


We engage globally with the health, education and disability sectors to ensure families are part of a committed, educated and engaged community.


We ensure the sustainability of the organisation by developing a diverse financial strategy that allows for its growth and longevity.

What critical actions are we taking to delivery these objectives?

Create a sense of belonging for our families through peer to peer connections.

Support families through the early stages of diagnosis and connect them with relevant health, education and disability professionals.

Remove barriers faced by families to ensure they have equitable access to health, community participation and education.

Provide targeted programs for children and young people with Usher syndrome to enable them to be independent and to develop self-actualisation.

Produce and deliver a biannual conference to bring together families and professionals.

Maintain an online knowledge library of information and resources that is relevant, accurate, and accessible.

Create and exchange (disseminate) research knowledge related to the treatment, care, support and clinical management of Usher syndrome.

Provide professional development programs to external stakeholders.

Collaborate with external stakeholders to improve the care of children with Usher syndrome across the life course.

Give voice to the lived experiences of our families by using it to inform and drive our advocacy efforts.

Enhance existing and explore new partnerships at both a local and global level.

Mobilise families through education of the benefits in participating in clinical and psychosocial research.

Raise awareness of Usher syndrome and our organisation to attract and support fundraising opportunities.

Be creative and adaptable with acquiring sources of funding that align with our strategic priorities to ensure the longevity of our programs.

Mobilise community groups with the tools to carry out fundraising events on our behalf.

Create and maintain a supportive work environment that enables a healthy work-life balance.

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