MISSION & VISION

SMA Logo HR-CMYK

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.