Información
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...
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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.
mostra menos
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.
Episodios & Posts
Episodios
Posts
16 JUL. 2025 · 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 MAY. 2022
10 OCT. 2021 · 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.
19 AGO. 2021 · 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.
28 JUN. 2021 · Why do I need to see an adult Neurologist with Lauren Sanders
27 MAY. 2021
5 MAY. 2021 · The Importance of a patient registry and why to participate
Guest: Robin Forbes
Visit http://smaaustralia.org.au for more information
21 ABR. 2021 · In this episode, we speak to Australian Paralympian Champion, Daniel Michel about getting involved in sports with a disability.
22 FEB. 2021
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...
mostra más
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.
mostra menos
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.
Información
| Autor | Alba Prime |
| Organización | Alba Prime |
| Categorías | Noticias |
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