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Australian Baby Becomes Ninth SMA Patient to Receive Nursinersen


Aviana McElwee from Darwin, Australia, was just a few months old when her doctor realized she was having problems reaching milestones. Tests later confirmed that she had spinal muscular atrophy (SMA). According to a report from, Aviana is the ninth baby in the world to receive the drug nusinersen (Spinraza) for free under the Expanded Access Program (EAP) while local hospitals and health authorities are waiting to be granted approvals for the drug.

Lexi Pacini from Colorado has made incredible progress while using nusinersen. Find out more here.

In just two months, Aviana’s parents and doctor have seen a marked improvement in her strength, mirroring what many of the babies on the clinical trial experienced with the drug. They were able to meet unexpected milestones such as crawling, standing and even walking.

Nusinersen has yet to be approved in Australia, but the SMA community there is watching with interest.

Find out more about the SMA treatment Spinraza.

SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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  1. my sister was diagnosed SMA at the age of 32., shes very weak now experiencing difficulty in breathing and swallowing.,we’re glad we read about this.,but we’re here in the philippines my query is how can we avail the drug nursinersen.,?we are very much please into the help and information that you could give us.,

    • Tim Bossie says:

      Thank you for reading and for asking your question. We do not know of any availability in the Philippines right now and would highly encourage you to talk with your doctor.

  2. Valene Mohammed says:

    How can my niece get on this program? We do not know where to turn…we live in Trinidad. .no treatment, she is in the hospital. …1 yr old plz help us get on this program…help us save our baby girl

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