June 2019 Update

03/06/2019 13 min
June 2019 Update

Listen "June 2019 Update"

Episode Synopsis

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