CEO, Julie Cini founded the Spinal Muscular Atrophy Association of Australia, Inc., after losing both her children to Spinal Muscular Atrophy in 2005 and 2007.
Spinal Muscular Atrophy Australia Inc. is Australia’s leading support association, providing sufferers of Spinal Muscular Atrophy and their families with care options, resources and choices for themselves or their children, when newly diagnosed with the disease.
Spinal Muscular Atrophy Australia Inc.is a not-for-profit, registered, tax exempt charity with deductible gift recipient (DGR) status. The charity receives no Government funding and relies on sponsorship, events and generous donations so they can provide their support services to their SMA families. The charity is governed by a voluntary committee of management.
Vision Statement – to be a pro-active source of energy and hope to support the SMA community
Mission Statement – to progress improved care for all Australians living with SMA, and that the SMA community have access to treatment options, research and timely diagnosis.
Statement of Purpose:
Our vision is for our community to be aware of Spinal Muscular Atrophy and supportive of those individuals and their families.
We aim to be the first point of contact as well as the specialists on support for the SMA community.
- To encourage and promote awareness of Spinal Muscular Atrophy to the general public, community, professional services and support networks
- To promote and provide ongoing support and information to families and sufferers of Spinal Muscular Atrophy
- To maintain and promote a specialist pool of equipment not provided by hospitals. To assist families with Spinal Muscular Atrophy that helps with quality of life
- To encourage families to become involved with the SMA community, to promote awareness and inclusiveness amongst families
Strategies
Support – improve the care for all Australians living with SMA, by offering a range of community activities that result in the SMA community being cared for, heard, supported and empowered.
Education – Increase awareness and understanding of SMA by empowering our community to educate the wider public, to lift the profile of the disease.
Advocacy – Change outcomes for the SMA community, by advocating to appropriate stakeholders that achieves access to carrier screening, timely diagnosis, and treatment options.
Research – support where possible, research initiatives that improves diagnosis, treatment and preventions for SMA
Fundraising – Maintain and grow sustainable fundraising practices to enable us to successfully achieve our mission.
Values
Provide to assist in providing education and support services to those affected by SMA and the wider community.
Support the mental, physical and emotional well-being of those affected by SMA and their families and carers
Inclusiveness – to include, empower and encourage all families to participate in their own treatment options and decisions.
Understanding – of our families and the difference of their needs.
Communication – to share SMA related information, to enable informed choices.