ADSG in Action: A look back at 2016!

australian-dystonia-support-group-a-look-back-at-2016

 It was another active year for ADSG. We now have over 500 Members! blue line

 ADSG working in the background

During the year we were busy communicating with neurologists, researchers and other networks to discuss possible research or projects in the future. We discussed the possibility of any future research to obtain data on how many Australians are diagnosed with primary or secondary Dystonia in Australia, as well as genetic testing. We also discussed the importance of education in Allied Health and rehabilitation relating to movement disorders such as dystonia. We are aware that access to therapy services that have experience or knowledge of Dystonia is an important issue for our members.

We communicated with Medtronic about providing information and education to members living with, or considering DBS. We would like to thank them for providing a DBS factsheet. 

There was an opportunity to provide submissions for a variety of issues that may affect people with chronic conditions, including Dystonia.  One of them related to the proposed changes to add pain killers or other products containing Codeine as a ‘prescription only’ item. One of the ADSG Admin took this opportunity to provide feedback in regards to the proposed changes. However recently, the Advisory Committee on Medicines Scheduling decided that in 2018, Codeine will be removed as an ‘over the counter’ item at pharmacies. This is to ensure there is sufficient time for patients to speak to their doctor about pain management and ask questions.

We also receive updates relating to Medicare, PBS, Botox and other health information. We do our best to raise Dystonia awareness and support members. A lot of time is spent gathering information relating to Dystonia or which may impact members. A thank you to the ADSG Admin for volunteering their time! ADSG will be back in action for 2017!

Have you seen this update? Fly for the Kids: A Mission for a Children’s Complex Movement Disorders Program 

Neurologist, Associate Professor Andrew Kornberg at the Royal Children’s Hospital is on a mission to fundraise for a Complex Movement Disorders Program to support children with Movement Conditions, including Dystonia. It will consist of a variety of health professionals or a multidisciplinary team to provide care, and innovative and intensive therapies, such as Deep Brain Stimulation.

Sue Kennedy was involved in this initiative and was part of a video ‘Brooke’s journey (one of our groups members) to help everyone understand how important this program is and that it can greatly improve the lives of children and young people like Brooke. We would like to take this opportunity to recognise their involvement and thank them for being such inspirational advocates!blue line

 Support meetings and presentations

Support meetings

Members had the opportunity to attend meet ups organised in some states, as well as presentations from a variety of health professionals. Link to photo of the QLD Gathering: Molecular Biologist, Dr Lucia Zacchi.

Have you seen the Brain Foundation free online Dystonia presentation? Neurologist Florence Chang from Westmead Hospital discussed Dystonia and answered questions. Link to online presentation: Dystonia Webinar.

Keep an eye out for more meet ups in 2017! Link: Support Meetingsblue line

Dystonia Awareness Month 2016!

Dystonia Awareness Month September

During the Dystonia Awareness Month, ADSG members joined in to help raise awareness of Dystonia. Information or Dystonia images were shared through social media or provided to other networks. Thank you to all who participated. During the Awareness Month, posts on our Community Facebook Page reached 13,500 people. An excellent achievement! Make it your mission for 2017 to raise awareness! Link to the Dystonia Awareness Month Page.blue line

Our Website – The Ins and Outs

Australian Dystonia Support GroupThe ADSG website was updated according to feedback provided by group and community members. A ‘Dystonia research’ page has been added with the latest research information or clinical studies that the community is able to participate in. This year we added more Dystonia information or flyers to our ‘Printable Information’ page so you are able to print some of the items to leave at clinic waiting areas or to just simply provide brief information to a community member. Website: Australian Dystonia Support Group

Views on our site have increased significantly and for 2016 there were 18,689 views. Visits to the site have doubled compared to 2015. This shows that the public is able to find our site, which is important if someone with Dystonia, their family members or carers, are searching for support. Most people found our site through Google search, Facebook or Twitter, Brain Foundation and Medtronic. 

Most popular posts or pages

Can’t hold my head up! Life story         Movement Disorder Specialists

Types of Dystonia Page                          How is Dystonia diagnosed?

What is Dystonia?                                   Have you heard of Dysphonia or Laryngeal Dystonia? (Post)

This reveals, as part of the health journey, that people are searching for common and basic information relating to Dystonia, including in a format that it is easy to understand. 

We would like to thank the networks or organisations that shared our details as it does help to reach out to more people with Dystonia and to find support.blue line

ADSG in Action with Social Media!

Australian Dystonia Support Group Facebook and twitter

Our Facebook Community page reached 1000 likes and climbing! It is still popular among the community. Posts reached approximately 100,000 members of the public during the year. Recently we updated the image or cover photo for the page, as some members were getting confused between the Closed Group Page and the Community Facebook Page. We hope this rectifies the issue. The page is linked to 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, organisations and networks.  If you like to join our group please click on this link Join our Group‘ or email us at ADSG@live.com.au or contact us via the ‘contact us’ page.  It is free to join and there is no membership fee

We now also have a Twitter Page with many followers!   

Australian Dystonia Support Group Facebook Page        Follow Australian Dystonia Support Group on Twitter

Thanks to Lisa and Hariklia, our Admin, for composing images for our Facebook page.blue line

Our imaginative image designers – A funny snippet of how it all happens!

the-journey-of-composing-images

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Dystonia Research – Check out what you have missed!

Why is dystonia research important j

Some of the research studies currently running and may be in need of volunteers. 

Exploring the interaction between the brain and the mind in dystonia – Monash Health

Cervical dystonia study

Queensland Parkinson’s Project (QPP) Dystonia Research Griffith University and University of Queensland

More on our ‘Dystonia Research’ page!


Top Research abstracts, reports or links!

Clinical exome sequencing in early-onset generalized dystonia and large-scale resequencing follow-up

Dopa-responsive dystonia or early-onset Parkinson disease – Genotype–phenotype correlation

The use of deep brain stimulation for the treatment for many movement disorders such as Parkinson’s, Essential Tremor and Dystonia

Australian patients’ and families’ perspectives on genome sequencing

Scientists develop new drug screening tool for dystonia

Clinical and demographic characteristics related to onset site and spread of cervical dystonia

The genetics of dystonia: new twists in an old tale

Brain structural changes in spasmodic dysphonia: A multimodal magnetic resonance imaging study

Australian Dystonia Support Group Facebook Page                                                                                Visit our Facebook Community Page for more! 

                  Dystonia Donate

Donate to research! Link to Donate page                                                                                 blue line

Information Information for noting

Australian Charter of Healthcare Rights – The Department of Health and Human Services is reviewing charter to ensure that the revised Charter reflects and serves the needs of all consumers. When the review is completed the community will be informed of changes.

Statement on Consumer and Community Involvement in Health and Medical Research – it was revised to provide clear guidelines for researchers to ensure effective involvement of consumers and community organisations in research.

Proposed Health Care Home program – for people with chronic and complex conditions or in primary care


NPS Medicinewise

5 questions to ask your doctor or health care provider factsheet and 5 steps to being medicinewise

About combination medicines and using complementary medicines or supplements

Should I purchase complementary medicines over the internet?

‘Dr Google’ is here to stay — So how do you do it safely?

A Guide to Staying Safe on Facebook and friending

Using the internet to find health and medical information and practical tips and advice blue line

What to look out for in 2017!

adsg-what-to-look-out-for-in-2016-david-castillo-dominici

  • Updates and information on Dystonia
  • Planned ADSG information meetings
  • Updates from networks or contacts
  • Medicare and PBS announcements
  • Fly for the kids: A Mission for a Children’s Complex Movement Disorders Program
  • The Pharmacist Chronic Disease Management Pilot

The Australian Dystonia Support Group would like to take this opportunity to thank all networks and our members for their support!

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