SMA Australia

Alba Prime

Spinal Muscular Atrophy (SMA) is a rare genetic muscle wasting disease that is the childhood version of motor neurone disease. 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.

  1. 16/07/2025

    Understanding the neurobiology of Fragile X syndrome and behaviours (Dr Marcia Braden)

    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 Australia in collaboration with Fragile X New Zealand on 13 July 2025. This presentation outlines: * the genetic basis of Fragile X syndrome * the neurological impact on cognition and behaviours which is caused by the lack of/reduced FMR1 protein for many individuals with Fragile X syndrome * neurological basis of traits associated with Fragile X syndrome: high anxiety; weakened short-term memory and attentional control; hyperactivity; and reduced executive function * overview of strengths and challenges in daily living associated with Fragile X syndrome * overview of behaviours which may result from the high levels of anxiety experienced by individuals with Fragile X syndrome * impact of elevated hyperarousal associated with Fragile X * neurological underpinnings of the behavioural cycle and interaction with the responses from parents/caregivers * reference to the ABCs of behaviour (Antecedent, Behaviour, Consequence) in supporting behaviours resulting from the neurobiology of Fragile X syndrome. This webinar/Q&A was presented on 13 July 2025, and hosted for Fragile X Association of Australia by Andrea Lee, Executive Director of Fragile X New Zealand.

    23 min

  2. 23/05/2022

    The Benefits of Intensive Therapy (Webinar)

    SMA Australia

    55 min
  3. Field Studies from the NSW Newborn Screening Pilot - Webinar

    11/11/2021

    Field Studies from the NSW Newborn Screening Pilot - Webinar

    SMA Australia

    44 min
  4. What About Me? Accessing Treatments for Adults

    10/10/2021

    What About Me? Accessing Treatments for Adults

    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 we are hosting this follow-up webinar with Dr. Lauren Saunders, from St Vincent’s Hospital in Melbourne, and Jo Watson, the Deputy Chair and Consumer Rep for the PBAC. We want to respond to your questions that you have regarding not being able to access treatment. Dr. Lauren will be answering any clinical questions, and Jo Watson, any questions you may have for the PBAC. SMA Webinar Series Number 9: What about me? Accessing treatments for adults We are asking YOU to submit questions to SMA ahead of the meeting so that we can address them on the Zoom call with everyone. We also want to plan for the next steps and how you can be involved.This is really important moving forward – as the united voice of the community, with regards to access to treatment is vital right now. We invite and encourage you to attend. These meetings have been organised to keep you in the loop and inform you what is needed moving forward. Please feel free to share amongst the community for those we may not be in touch with, the greater the conversation we can have around this issue, the better we can help you to gain access to medicines.

    1h 28m
  5. Newborn Screening Advocacy Next Steps (Webinar)

    19/08/2021

    Newborn Screening Advocacy Next Steps (Webinar)

    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 need for NBS in each state. As we have previously stated, a person’s postcode shouldn’t determine if they get screened at birth for SMA.

    58 min

  6. 28/06/2021

    Why do I need to see an adult Neurologist

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

    1h 29m

  7. 27/05/2021

    Q&A with Jo Watson

    SMA Australia

    52 min

  8. 05/05/2021

    The Importance of a patient registry and why to participate

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

    50 min
See All (22)

About

Spinal Muscular Atrophy (SMA) is a rare genetic muscle wasting disease that is the childhood version of motor neurone disease. 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.

Information

  • Creator
    Alba Prime
  • Years Active
    2019 - 2025
  • Episodes
    22
  • Rating
    Clean
  • Copyright
    © Copyright Alba Prime
  • Show Website
    SMA Australia