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SMA Australia

SMA AUSTRALIA

Phone: (03) 9796 5744

DONATE TO SMA HERE 

 

Welcome to Spinal Muscular Atrophy Australia

Welcome and thank you for taking the time to visit our community here at SMA Australia. Spinal Muscular Atrophy (SMA) is a rare genetic muscle wasting disease that is the childhood version of motor neurone disease. The disease not only affects the muscles you see like your arms and legs, but all the muscles you can’t see, like your breathing, coughing and swallowing. SMA is a physical disability only and one’s intelligence is not affected. People go to main stream schools, hold regular jobs, live independently, have relationships and do many things that make their lives meaningful. In recent years there has been some exciting new developments with treatments, and we have been campaigning the Australian government to have access to this treatment here in Australia.

If you are newly diagnosed, or have just come across our page for the first time, we urge you to get involved, within the SMA community here in Australia. We would love to hear from you and are happy to support you on your journey.

We acknowledge that each person is different, and we endeavour to assist you and your requirements.

 

Special Announcement

Special Announcement


    Today we are extremely excited to announce that the PBAC gave …

Spinraza costs $100,000 a dose

Spinraza costs $100,000 a dose


  A Canberra mother, forced to watch her two-year-old son's rapid declin…

Parents take battle for lifesaving drug to parliament

Parents take battle for lifesaving drug …


Six-year-old Violet Rickard sometimes asks her mother if she’s going to die. …

Minister Tables Petition

Minister Tables Petition


 The Hon Anthony Byrne member for Holt, tabled in Parliament the recent p…

2018 04 anthony byrne

 The Hon Anthony Byrne member for Holt, tabled in Parliament the recent petition with 11,201 signatures! Listen to his speech about SMA and the petition below.

This morning I tabled in the Australian Parliament a petition from Spinal Muscular Atrophy Australia signed by 11,201 signatories. This petition requests the Australian Government to urgently fast track the availability of the life-saving drug Nusinersen (Spinraza) on to the PBS list for all patients with Spinal Muscular Atrophy by June 2018.

This life-saving drug will radically improve the quality of life for all patients with Spinal Muscular Atrophy (SMA), the childhood version of Motor Neurone Disease. Thanks to Julie Cini for leading efforts with this petition.

 

Click Here to listen to his speech