Who Are We?

HISTORY OF SMA

Our CEO, Julie Cini founded Spinal Muscular Atrophy Australia Inc. after losing both her children to Spinal Muscular Atrophy in 2005 and 2007.

Julie’s first daughter Montanna, died on June 25, 2005 aged only ten months. In the midst of dealing with this tragic loss, came the death of Julie’s partner, Ross Brownlaw who was struck by a truck in the driveway of their family home in May 2006, when Julie was just thirteen weeks pregnant. Zarlee was welcomed on December 13, 2006 and lost her battle with SMA on Christmas Day, 2007 aged 12 months. The charity was started 6 weeks after Montanna passed away, with Julie and Ross knowing well before this the need for a support service in Australia. Julie is extremely passionate about ensuring access to treatment for the whole community, as well as advocating to relevant stakeholders about a range of issues within our community.

OUR SERVICES

Spinal Muscular Atrophy Australia Inc. is Australia’s peak body, providing Australians living with Spinal Muscular Atrophy and their families with best practice information care options, resources and choices for themselves or their children, when living with the condition.

Since being founded in 2005, SMA Australia has been supporting families for 15 years. Evolving from one on one family support to a national advocacy campaign to gain access to treatments. We continue to bring together the SMA community, through peer to peer support programs, as well as developing best practice outcomes for those living with SMA in Australasia. Our advocacy efforts have created options for families, past, present and future. We provide a cough assist machine equipment loan pool to our members.

Until recent treatment advancements there was no known cure for SMA; and historically, nearly half of those born with Type 1 died before the age of two, and children with type 2 generally died before adulthood. Advancements have seen the first drug,

Spinraza, become available on the P.B.S. in May 2018 for those with Type 1, 2 and 3 under the age of 19 years. We are currently advocating for an additional two treatments to be funded on the PBS in Australia.

In 2018 the charity were instrumental in campaigning for an initiative from the government called “Mackenzie’s Mission”.

Currently a pilot study (January 2020) is testing 10,000 couples for more than 700 genetic conditions (of which SMA is one) to pick up carrier couple before they start family planning. This will enable families to make informed decisions about their reproductive future. The three year pilot study aims to determine the evidence for making free reproductive genetic carrier screening available to all couples in Australia who wish to have it.

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

We are the peak body for SMA in Australasia. Providing timely access to best practice resources, support advocacy and access to treatments for the SMA community.

Our vision is for our community to be aware of SMA and supportive of those individuals and their families.

MISSION

To pro-actively care, support and provide best practice resources for all SMA communities.

Care: for those directly and indirectly affected by SMA, i.e. people living with SMA and their families and healthcare professionals.

Provide: to assist in providing services to those affected by SMA, or helping them navigate the system for services.

Support: to provide a holistic approach and support the mental, physical and emotional wellbeing of those living with SMA.

STATEMENT OF PURPOSE

  • 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 best practice information to families and people affected by Spinal Muscular Atrophy.
  • To maintain and promote a pool of cough assist machines not provided by hospitals, or funded by other means, that may help with quality of life.
  • To encourage families to become regular contributors within the SMA community, to promote awareness and inclusiveness amongst families.

Support

Improve the care and access to treatment for all Australians living with SMA, by offering a range of community based initiatives that result in the SMA community being cared for, heard, supported and empowered.

Education

Empowering our community to be ambassadors for SMA to educate the wider public, to increase the profile of the condition.

Advocacy

Ensure the voice of the SMA community is heard by advocating to key stakeholders to achieve access to carrier screening, timely diagnosis, and access treatment options.

Research

Support research initiatives that improves diagnosis, treatment and preventions for SMA.

Fundraising

Maintain and grow sustainable fundraising practices to enable us to achieve our mission.

Values

Tolerance: towards others without passing judgment.

Differences: acknowledge these within our community.

Accountability: for actions and decisions.

Understanding: to SMA families and each other.

Respectful: of personal choices and decisions.

Honesty: to our families and within our business.

Communication: to become aware and share best practice SMA related information and resources for the community.

Inclusiveness: to include all families living with SMA, in the wider SMA community.

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