Jun 6, 2017

Julie Cini – Champion Advocate of Spinal Muscular Atrophy

Earlier this month Julie Cini, Chief Executive Officer of Spinal Muscular Atrophy Australia Inc (SMA Australia), met with Anthony Byrne MP, to discuss a new treatment which will aid those suffering with Spinal Muscular Atrophy.

Spinal Muscular Atrophy is the number 1 genetic disease killer of infants under the age of three. It is the childhood version of Motor Neurone Disease, and leaves young children who are diagnosed with this disease unable to do simple everyday tasks such as playing with toys and cutting food to eat.

This new treatment is a drug named Spinraza. Spinraza works by injecting the protein which sufferers of Spinal Muscular Atrophy are deficient in straight into the spine through a lumbar puncture. It is an extremely invasive procedure. However, the families of infants suffering from Spinal Muscular Atrophy are desperate for a treatment option. In most cases, infants who are diagnosed with Spinal Muscular Atrophy have a short life expectancy. There is currently no other effective treatment available. This is why Spinraza is such a beacon of hope for children who suffer from Spinal Muscular Atrophy.

Leading the campaign to place Spinraza on the Pharmaceutical Benefits Scheme has been local champion Julie Cini from Berwick. Julie founded SMA Australia in 2005 and has since devoted herself to Spinal Muscular Atrophy after her first of two daughters was diagnosed with the disease.

“I first met Julie Cini 8 years ago when she told me about her story of loss and hope. Julie lost her two children to Spinal Muscular Atrophy, and also lost her partner in a tragic car accident during this time. Whilst most people would be unable to cope with such tragedy and loss, Julie became inspired to help other families so that there would hopefully come a day where they do not have to suffer as she did. It’s through Julie’s tireless work with her charity Spinal Muscular Atrophy Australia Inc. that she has been lobbying for the Spinraza drug to become available on the Pharmaceutical Benefits Scheme. This drug offers hope for those families who currently have no other options for treatment,’ said Mr Byrne.

“I promised my girls that I would change the way people see this disease here in Australia. Now 12 years later, this will be one of my biggest achievements. To see an effective treatment available for those with Spinal Muscular Atrophy, and to be able to give the gift of hope to families makes the countless hours of fundraising worth it,” said Julie Cini.

“I urge the Turnbull Government to fast track consideration of the drug to the Therapeutic Goods Administration and Pharmaceutical Benefits Advisory Committee. I also congratulate Julie on her amazing efforts on behalf of all those families with those experiencing Spinal Muscular Atrophy,’ said Mr Byrne.

Media Enquires: Daniel White (03) 9796 7533


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