Spinal Muscular Atrophy Australia Inc. in Hallam, Victoria, Australia | Community organisation

Spinal Muscular Atrophy Australia Inc.

Locality: Hallam, Victoria, Australia

Phone: +61 3 9796 5744

Address: Unit 7 16-28 Melverton Drive 3803 Hallam, VIC, Australia

Website: http://www.smaaustralia.org.au

Likes: 6569

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• Non-profit organisation
• Charitable organisation
• Community organisation

22.01.2022 Here is Heath and Elijah for our #polaroidcampaign what cutie little guys! #beSMAaware #SMAawarenessmonth #ijoinedthefight

21.01.2022 Siblings Mack and Madison and also Aiden who we remember for the #polaroidcampaign #beSMAaware #SMAawarenessmonth #ijoinedthefight

21.01.2022 2 medicines for SMA Spinraza (for those over 19) and Zolgensma will be considered by the Pharmacetuical Benefits Advisory Committee (PBAC) in November. You have the chance to make a comment on why this drug should be reccommended. Here are some great tips from our friends at Patient Voice Initiative. you can make your voice heard by clicking this link and leaving a comment https://www1.health.gov.au//Co/PBAC_online_submission_form #beSMAaware #PBAC #consumercomment... #ijoinedthefight See more

21.01.2022 Did you see our personalised Christmas baubles? They are availbale in the SMA Shop. Order before 12 December. #Christmas #baubles #fundraising #beSMAaware https://smaaustralia.org.au/shop/

20.01.2022 Brothers Jordan and Tyler are our last #polaroidcampaign photos Thank you all for sending in your photos for awareness month #beSMAaware #SMAawarenessmonth #ijoinedthefight

16.01.2022 Another fantastic milestone for the SMA community. Let’s hope the result is the same in December when they publish the summary documents from the November meeting. #beSMAaware

16.01.2022 A brand new resource for those transitioning into school or kinder. Email us to order your copy today #beSMAaware #SMAresource #ijoinedthefight #access

15.01.2022 Here is Jonothan and Sam for the #polaroidcampaign #SMAawarenessmonth #beSMAaware #ijoinedthefight

15.01.2022 ANNOUNCEMENT - The PBAC agenda is now public and Spinraza and Zolgensma will be reviewed at the November meeting. We are seeking those who would like to make a comment to join us on this websinar with Jo watson the Consumenr Rep of the PBAC. Click the link to register for this important webinar on how you can make a difference for public comment. https://us02web.zoom.us//register/WN_QZFrOrQtReCN0WYk-_wmoQ

14.01.2022 Have you seen the book called #ZacsPlayDay ? Its about Zac who has #SMA The book is available and is free, and if you would like a copy sent to you please email [email protected] and we will organise them to be posted to you directly.

13.01.2022 Dont forget this webinar is on at 11am tomorrow. Dr. Michelle will be speaking about multidisciplinary care. Feel free to send any questions ahead of the webinar to Julie at [email protected] If you havent registered, please do so at the link below #beSMAaware

13.01.2022 with 24 hours of no access to files I have a couple more photos to share for the #polaroidcampaign We remember Tasha and Georgia #beSMAaware #SMAawarenessmonth #ijoinedthefight

13.01.2022 Here is everyone that participated throughout August for the #polaroidcampaign I am more than happy to continue to add up photos, so feel free to send them into me at [email protected] #beSMAaware #ijoinedthefight #SMAawareness

12.01.2022 The updated Adult Experiences booklet is now available. If you would like to recconnect with your federal MP, then please contact [email protected] and we will organise you a personalised letter to email to them to give an update. It is also uploaded to the app for you to download and read straight away #beSMAaware #SMAawareness #ijoinedthefight

11.01.2022 Here is yesterday’s announcement on the 9 news #beSMAaware

11.01.2022 The Challenge needs your help tell us what matters to you and how we can help! Visit https://smaaustralia.org.au/join-the-trailblazer-challenge/ to share your challenges today. #SMAawareness #beSMAaware #hackathon

10.01.2022 Recently I was a judge for a hackathon where innovators came up with solutions for the SMA community - one of the teams designed a bed that turns you during the night. They have asked if the community are able to fill in their surveys to help them with the next steps. The survey should take no longer than 15 min. There is a Individual survery for those living with SMA and a parent/caregiver one. Here is the link to the Individual on and the Parent/caregiver survey is a link in the comments. The Team thank you in advance for filling in the survey! They are also looking for about 6 people to be involved in a focus group through the design process, If you would like to help out, please message the page - Thank you! #beSMAaware #ijoinedthefight https://www.surveymonkey.com/r/9Q973SQ

08.01.2022 PBAC Webinar Summary Thanks for those who turned up and asked great questions. Today's webinar was full of great information thanks to Jo Watson from PBAC. You can catch the replay on the SMA Community App. We have another great webinar coming up next month for you so don't forget to send questions/feedback to us at [email protected]

08.01.2022 A new webinar has been organised and we are thrilled to welcome Al Freedman to talk to our commuity. here is the link to register https://smaaustralia.org.au/sma-webinar-series-number-2-wi/ #beSMAaware

06.01.2022 Remembering Lily and Nicholas for the #polaroidcampaign still a few days to go send yours in to [email protected] #beSMAaware #ijoinedthefight #SMAawarenessmonth

06.01.2022 Each year we work with genetic counscelling students to give them real world experience. This year we are working on a resource pack for when kids transition into school. They are looking to interview some families on Wednesday - can anyone help with an interview? please message us to organise.... Thank you #beSMAaware

06.01.2022 New Christmas baubles added to the shop for those wanting a personalized bauble which we do each year! You have till the 12 December to place your orders for a xmas delivery!! #beSMAaware

05.01.2022 Dont forget we have out webinar tomorrow with Jo Watson from the PBAC. Her knowledge is extremly valuable and has made time from her busy schedule to support our community. Thank you for the questions, if you would like to ask a question please email Julie at [email protected] to be asked tomorrow! link to register below #beSMAaware

05.01.2022 For anyone who was trying to order a mask in the last 2 weeks the link has been broken, but is now fixed if you need to order one. We have little delay in making them to post to you. Cheers #TeamSMA #masks #thankyou

02.01.2022 Dont forget that consumer comments fro Spinraza (over19) and Zolgensma are still open ( they close next Tuesday 7th October) for comment. If you havent made a comment - we urge you to do so. It is an important part of the patient voice for the review of medicines. #beheard #yourvoice #beSMAaware #getinvolved #ijoinedthefight

02.01.2022 here is Reuben for the #polaroidcampaign #SMAawarenessmonth #beSMAaware #ijoinedthefight

01.01.2022 Here is Jack for the #polaroidcampaign #beSMAaware #ijoinedthefight #SMAawarenessmonth