SMA Australia

Presented by psychologist Marcia Braden PhD, this overview lays the foundations for understanding and supporting the neurological underpinnings of behavioural presentations associated with Fragile X syndrome.  This was the introductory presentation by Dr Braden for a live Q&A webinar on supporting behaviours in young children with Fragile X syndrome, produced by Fragile X Association of Austra...

We know the non-recommendation of both Nusinursen (Spinraza) and Evrysdi (Risdiplam) for the adult community has left many feeling deflated. We want to acknowledge this and also reassure you; we haven’t stopped in our quest to work with the relevant stakeholders to ensure that future submissions to the PBAC are the best representation of our adult community – but we can’t do this without YOU! So w...

Now that Newborn Screening (NBS) has been recommended, we turn our focus to the Australian states and territories, as this is where NBS gains funding. Each state has to allocate in their budget to pay for testing. Some states are actively looking at funding NBS, whilst in other states it’s not even on their radar for funding, so we together as a team need to campaign as a team to highlight the nee...

Why do I need to see an adult Neurologist with Lauren Sanders

The Importance of a patient registry and why to participate Guest: Robin Forbes Visit http://smaaustralia.org.au for more information

In this episode, we speak to Australian Paralympian Champion, Daniel Michel about getting involved in sports with a disability.

Jo Watson shares information about the process behind PBAC and Consumer Input

Fiona Tolich “My ultimate goal is to get access to treatment. New Zealand is the second lowest country in all of the OECD countries to get access to the expanded access program. We will keep fighting. My motto is we leave nobody behind. “ - Fiona Tolich Fiona is 30 year old SMA diagnosed mother from New Zealand. In this episode, she talks about how SMA made her want to advocate for the basic human...

James Ian “Music for sure saved me...and helped me break out of my shell, and started writing songs that would resonate me overcoming challenges.” - James Ian In this episode, James talks about his touching story of how music changed his life. Having SMA was never a blocking factor for living his life to the fullest. No matter how different others see him because of his condition, he nonetheless h...

Sook Yee "My son started painting when he's 2 years old, and we use that as a therapy." --Sook Yee. Sook Yee is a Malaysian mom whose son has SMA. Doctors believed her son had only one year to live. Now that her son just celebrated his ninth birthday, Sook Yee finds a way to empower people in her SMA advocacy. Sook Yee explains how she inspires parents in Malaysia with children with SMA. Here are...

Al Freedman “We’re lucky to have our kids to however long we have them, and that’s how I feel about my son… think about what our kids can do.” - Dr. Al Freedman Having a support system from friends and families for our people who are diagnosed with SMA is the most wonderful way we can build a better community for them. We are joined by Dr. Al Freedman who is a psychologist by profession and a lovi...

Zolgensma drug by Avexis brought into Australia Roche - https://www.roche.com/research_and_development/what_we_are_working_on/neuroscience/approaching-sma.htm Parliament date to be announced, looks like some time in August 2019 (Awareness Month) Gala in Melbourne and Brisbane. Purchase tickets here: https://smaaustralia.org.au/get-involved/upcoming-events Please contact us if you would like to see...

We speak with Ellie Robertson on her thoughts and process of NDIS self management.

Today's guest is Liliana Bulfone and Julie discusses the PBAC process and Spinraza. Contact us at reception@smaaustralia.org.au or call (03) 9796 5744 Visit our website at http://www.smaaustralia.org.au Facebook https://www.facebook.com/SpinalMuscularAtrophyAustralia