It was a busy year for ADSG. We now have about 400 Members!
Here is a recap of 2015!
Launch of ADSG Facebook Community Page
The launch of the community page was overwhelmingly a success and is still now popular among the community. The page is linked up with our website to ensure that community members know how to find us and have options in communicating with us. We provide updates and information on Dystonia as well as sharing links from other groups or organisations. A recap of page:
- We have close to 700 likes
- Posts reached approximately 105,000 of the public during the year (an amazing achievement!)
A thanks to Lisa and Hariklia, our admins for composing images for our Facebook page.
Visit our page! ADSG Facebook Community Page
ADSG Website – Recap of site
The top 4 topics people were interested about!
Dystonia Awareness Video
Movement Disorder Specialists
Types of Dystonia
We had approximately 14,000 views of our site, mostly from Australia. That is amazing! We had 58 external networks that referred people to our site. Facebook, Google and the Brain Foundation were our top referrers.
The most commented on post in 2015 was A Deep Brain Stimulation (DBS) Journey – Through the Eyes of a Carer Link to Interview
Visit our website – ADSG Website
Designed our new ADSG Card
A special thanks to Lisa McInnes, one of our admins, for designing the card. If you would like to print the card click on link provided.
Dystonia Awareness Month
We had another Dystonia Awareness Month in September where ADSG members joined in and helped raise awareness of Dystonia. Members organised events or info stalls, an updated awareness video was available to view and links to information on Dystonia. Thank you to all who participated. Snippet of the Dystonia Awareness Month
Support meetings and Presentations
Members attended ADSG events and gatherings in various states. Dr Lynley Bradman presented, in Brisbane, about her research and work on Dystonia. Her recent research is the exploration of the relationship between confidence in balance and fear of falling to functional independence in people with dystonia. We thank her for her ongoing support. Research/Dystonia Function Survey
The Parkinson’s Australia National Conference – Dystonia Program
The Parkinson’s Australia National Conference was held in Adelaide at the Convention Centre in May 2015. The Dystonia Program ran on Friday 29 May 2015 and was very successful. Some ADSG members attended the sessions where there were a variety of presentations. Direct link to summary and slides of the program
We communicated with Parkinson’s QLD as many people with Parkinson’s do suffer from Dystonia also. They are interested in hearing from people throughout Queensland living with Dystonia or caring for someone impacted by the condition. Dystonia article in their Magazine – “Connections” Magazine
Connect Neuro Physiotherapy
Collaborated with Connect Neuro Physiotherapy to provide info on Neuro Physio.
New arrangements for the Botulinum Toxin
Advocated for appropriate information to be provided to group and community members. Patient co-payments now apply for each prescription of a botulinum toxin product. New arrangements took effect in September 2015 – New arrangements factsheet
ADSG website Survey
Updates and information on Dystonia
Planned ADSG information meetings
Ipsen and Allergan updates
Updates on the Medicare review
We would like to thank all the support from members and other networks, especially during awareness month.