Former CEO, Julie Cini, founded SMA Australia after losing both her daughters to Spinal Muscular Atrophy Type 1.
Julie’s first daughter, Montanna, died on 25 June 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 with their second daughter. Zarlee was welcomed on 13 December 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 for people living with and caring for SMA people in Australia.
Julie’s dedication over the past 20 years has seen the outlook for our community drastically change – from having no available treatment to three different medicine options, a national newborn screening program, as well as the introduction of a genetic carrier screening program for SMA, Cystic Fibrosis and Fragile X syndrome.
In June 2023, Julie was awarded the Order of Australia Medal (OAM) for ‘services to community health’, recognising her extensive work in creating SMA Australia and her extraordinary dedication to making a difference for SMA patients.
Julie is still involved with SMA Australia and, as a spokesperson and a lifetime member of the committee, is extremely passionate about ensuring access to treatment for the whole community, as well as advocating to relevant stakeholders about the issues we face.
SMA Australia is founded.
SMA Australia hosts our first Annual Fundraising Gala Dinner for SMA.
SMA Australia hosts our first Million Steps for SMA fundraising walk.
SMA Australia holds our first Parliamentary Event in Canberra, getting the condition on the radar of key decision makers in Federal Parliament.
The Therapeutic Goods Administration (TGA) approves Spinraza (nusinersen) for the treatment of 5q SMA.
Spinraza is listed on the Pharmaceutical Benefits Scheme (PBS) for the first time – the first treatment available for children with SMA in Australia. It is initially listed for those 18 years and younger at age of initiation with SMA types 1, 2 or 3a, demonstrating symptoms prior to three years of age.
The first pilot program for Newborn Bloodspot Screening (NBS) for SMA is started in NSW and the ACT.
SMA Australia holds our second Parliamentary Event.
The PBS listing of Spinraza is expanded to include pre-symptomatic children with 1–2 copies of the SMN2 gene.
The TGA approves Zolgensma (onasemnogene abeparvovec) for the treatment of 5q SMA in eligible patients less than 9 months of age with symptomatic or pre-symptomatic SMA and 1-3 copies of the SMN2 gene.
The Federal government recommends SMA screening be rolled out nationally as part of the NBS program.
The TGA approves Evrysdi (risdiplam) for the treatment of 5q SMA in children aged 2 months and over.
Evrysdi is listed on the PBS for children with SMA in Australia. It is initially listed for those 18 years and younger at age of initiation with SMA type 1, 2 or 3a, demonstrating symptoms prior to three years of age.
SMA Australia hosts the beSMAaware wellbeing conference.
Zolgensma is listed on the PBS for the first time – the first gene therapy in Australia to be listed on the PBS. It is initially listed for the treatment of children less than 9 months of age genetically diagnosed with SMA Type 1 or pre-symptomatic children who have 1–2 copies of the SMN2 gene.
Screening for SMA is rolled out as part of the NBS program in NSW & ACT, following the completion of the pilot program.
The PBS listing of Spinraza is expanded to include the treatment of adults whose symptoms appeared before 19 years of age – the first treatment available for adults with SMA in Australia.
The PBS listing of Spinraza is expanded to include children with SMA Type 3b/3c.
WA announces their NBS program will include screening for SMA.
The TGA listing of Evrysdi is expanded to include people of all ages with 5q SMA.
QLD (including northern NT) announce their NBS program will include screening for SMA.
SMA Australia holds our third Parliamentary Event, providing an opportunity for our community to formally thank members of Parliament and their distinguished guests for supporting our efforts to gain PBS access to the latest SMA treatments over the past six years.
The PBS listing of Evrysdi is expanded to include adult patients who experienced SMA symptom onset prior to 19 years of age and did not initiate an SMA therapy in childhood, children with SMA Type 3b/3c, and children with confirmed genetic diagnosis of SMA who have 1–2 copies of the SMN2 gene.
The PBS listing of Zolgensma is expanded to include pre-symptomatic children less than 9 months of age genetically diagnosed with SMA who have 3 copies of the SMN2 gene.
Genetic carrier screening for SMA, Cystic Fibrosis and Fragile X syndrome is 100% covered by Medicare for anyone who is pregnant or planning a pregnancy and their reproductive partner.
SA (including TAS and southern NT) announce their NBS program will include screening for SMA.
Victoria announces its NBS program will include screening for SMA.
The PBS listing of Spinraza is expanded to include pre-symptomatic children who have 3 copies of the SMN2 gene.
The PBS listing of Evrysdi is expanded to include pre-symptomatic children with confirmed genetic diagnosis of SMA who have 3 copies of the SMN2 gene.
for those directly and indirectly affected by SMA, including people living with SMA, their families, friends and community.
support in navigating an SMA diagnosis and the services available.
a holistic approach to the mental, physical and emotional wellbeing of those living with SMA.
towards others without passing judgment.
in the experiences of our SMA community.
for our actions, decisions and promises made to our SMA community.
towards our SMA community and each other.
of personal choices and decisions.
towards our community and within our business.
with our SMA community and beyond, to raise awareness and share information and resources.
of all people living with SMA and their family, friends and communities.
Improve access to quality care and treatment for all Australians living with SMA by supporting research initiatives into diagnosis, treatment and prevention; hosting of sustainable activities to help us achieve our mission; and providing timely access to best-practice information and resources for those in need.
Empower our community in their SMA journeys, arming them with the latest information and resources to ensure they achieve the best outcomes possible.
Ensure the voice of the SMA community is heard by advocating to key stakeholders and encouraging our community to become ambassadors for the condition.
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Spinal Muscular Atrophy Association of 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, memberships and generous donations so they can provide support services to SMA families.
The charity is governed by a voluntary committee of management.
SMA Australia has been supporting families for over 20 years since our foundation in August 2005, evolving from one-on-one family support to national advocates for access to the latest SMA treatments.
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This website is not intended to replace medical advice. Please speak to your healthcare professional for more information.
Join a powerful community of supporters who are helping tackle spinal muscular atrophy at its very core. Our community relies on us for support and best-practice resources to guide them in living well with SMA, as well as for resources to help raise disease awareness, educate others and advocate for people living with SMA in the wider Australian community.
