SMA Australia

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.

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.

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

The Importance of a patient registry and why to participateGuest: Robin ForbesVisit 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 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

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

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 the highlights of her interview:Practising the best standard of care is vital to every child’s journey with SMAMotivating her son to enjoy his past time, such as painting, and made that a symbol to inspire othersRaising funds from his son’s paintings with the help from Unicef and Petronas in MalaysiaTaking advantage of radio and newspaper to spread information on the best standard of care for SMAContinued search on websites and countries containing information dealing with SMAGiving importance on attending SMA conferences to connect to people with the same experienceSook Yee’s son has no Facebook page yet but they were able to set up a Facebook group called “Brandon Growing Up with Spinal Muscular Atrophy”.Discover more in this podcast how Sook Yee is inspired her by her son’s happy disposition to continue her amazing advocacy of SMA. Sook Yee can’t wait to share valuable information on SMA management in May next year for SMA Australia conference.Cure 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

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 FreedmanHaving 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 loving father to his son, Jack, who has SMA.Listen in to our discussion about the following topics:Dr. Freedman’s inspiring story about his son, Jack (0:54/ 3:41)What advice we can share to families with children diagnosed with SMA (1:30)Global SMA conference by Cure SMA (3:30)The SMA Community and Support Groups (5:02)Upcoming SMA conference with Dr. Freedman in Australia (5:49)Peer-to-peer discussions between kids with SMA (6:55)Stigma around SMA (Spinal Muscular Atrophy) (8:08)Parenting advice from Dr. Freedman (8:56)And there are more discussions at the end of this episode!Know more about Dr. Al Freedman at http://www.drfreedman.com/Cure 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

Zolgensma drug by Avexis brought into AustraliaRoche - https://www.roche.com/research_and_development/what_we_are_working_on/neuroscience/approaching-sma.htmParliament 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-eventsPlease contact us if you would like to see a Sydney eventBe SMA Aware App currently in development. Please share what are things that you are struggling with and need support with.Currently working on a dedicated SMA Conference for May 2020 (potentially on the Gold Coast)Newborn Screening fact sheet:https://www.facebook.com/SpinalMuscularAtrophyAustralia/photos/a.370736359243/10157422001809244/?type=3&theater

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 5744Visit our website at http://www.smaaustralia.org.auFacebook https://www.facebook.com/SpinalMuscularAtrophyAustralia