SMA Australia

Field Studies from the NSW Newborn Screening Pilot - Webinar

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 adultsWe 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.

What About Me? Accessing Treatments for Adults

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.

Newborn Screening Advocacy Next Steps (Webinar)

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

Why do I need to see an adult Neurologist

Q&A with Jo Watson

The Importance of a patient registry and why to participateGuest: Robin ForbesVisit http://smaaustralia.org.au for more information

The Importance of a patient registry and why to participate

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

Getting involved in sports with a disability

Self Managing your NDIS

Adult working group and next steps

SMA Webinar - Best Practices

Supporting the Emotional Health of our SMA families During Uncertain Times

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

PBAC Processes and Consumer Input

SMA Parliamentary Summit 2019

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 TolichFiona 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 right which is having access to the most modern treatment and medicine for SMA. Listen in to our discussion about the following topics:Fiona shares her SMA journey and how it would have been treated earlierHow scarce SMA-related information is in New Zealand back in the daysHow she committed herself in advocating for access to treatment and medicine for NZInformation and support she gained from the SMA conferenceFiona is excited to bring home more stories of inspiration and helpful information about SMA management in May 2020 at the SMA Australia conference.Check out the links below to know more about Fiona Tolich and SMA:Facebook - https://www.facebook.com/fiona.maccallum.3LinkedIn - https://www.linkedin.com/in/fionatolich/?originalSubdomain=nzCure SMA - http://www.curesma.org/Call us (03) 9796 5744Email us at reception@smaaustralia.org.auVisit our website at http://www.smaaustralia.org.auFacebook Page: https://www.facebook.com/SpinalMuscularAtrophyAustralia

Fiona Tolich

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 IanIn 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 has a great support system through his family.Listen in to our discussion about the following topics:James shares his SMA diagnosis journeyHow music became a huge part of his lifeJames’ style and influence of music and his album!How his songs in his album were createdSMA conference in AustraliaMake sure to check out and support James Ian and his album called “The Labor of Love”Song in the intro: https://www.youtube.com/watch?v=5qfaizGGG8oSpotify: https://open.spotify.com/album/2SgQExsOK7vSi7dZOE6IoqTwitter: https://twitter.com/jamesianmusic?lang=enYouTube: https://www.youtube.com/channel/UCAZW7oh7MqxihkkIj9kXBDQiTunes/Apple Music: https://itunes.apple.com/us/album/the-labor-of-love/1204076181Cure SMA - http://www.curesma.org/Call us (03) 9796 5744Email us at reception@smaaustralia.org.auVisit our website at http://www.smaaustralia.org.auFacebook page: https://www.facebook.com/SpinalMuscularAtrophyAustralia

James Ian

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.

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SMA Australia

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