During 2018 we supported people with Dystonia and their family members. We linked further with networks, health professionals or researchers and shared information as well as updates relating to Dystonia. We would like to give thanks to organisations and networks who have connected, collaborated with or supported ADSG. We are now listed on the Healthdirect National Health Services Directory (NHSD). There is a diverse group of people using the directory and since our details are included to the search options they can reach us. It is also connected with health professionals and other health services. They can find us and refer their patients or clients to us if they wish to for support. We are pleased to announce that ADSG was selected for preservation by the National Library of Australia and listed under Pandora Australia’s Web Archive. The Pandora is a selective archive. The National Library and its partners select those that they consider are of significance and have long-term research value. We are grateful to be listed!

Please read this yearly review for more!

(Open to Australians)

Click link: Join our group Once directed to group page click ‘Join Group’ tab. Please check for a reply in your Facebook messages inbox. The other option is to email us at ADSG@live.com.au.

Jan 2019 — 800 members

Join Our Group

Supporting, Linking and Sharing

Australian Dystonia Support Group Yearly Review 2018

Gatherings, Presentations and Events

Dystonia Awareness Month (Sept) 2018

We reached 47,666 people!

(Via Facebook)

More than last year!

Our fantastic awareness poster was shared! Many thanks to ADSG members who provided quotes for the poster to raise awareness and understanding. We were delighted also that Medtronic included our poster to their digital signage during the Dystonia Awareness Month to all their ANZ offices (5 in Australia, 1 in New Zealand). We thank them for their involvement. Like or share → ADSG Dystonia Poster.

A BIG thanks to all who participated!

► Dystonia Awareness page

This popular image reached 15,812 people!

Click image to like or share

ADSG End of Year Gathering in Queensland Seek permission to share photo

Australian Dystonia Support Group (ADSG) Presentation

We had an opportunity to share a presentation about our support group at the Dystonia Network Australia (DNA) Awareness Seminars. We thank them for presenting it for us in Sydney (Chris Gavenlock) and Margot Chiverston for presenting it in Adelaide. Click link to view our brief presentation → About ADSG Slide PDF.

Support Meetings and information sessions

Support meetings were arranged during the year by ADSG or group members. They are a great way of meeting each other and catching up . Visit our ‘Support Meetings’ page for meet ups or gatherings. During the year there were opportunities to attend great information sessions organised by members and some by APCN (QBI) for patients and carers living with Parkinson’s Disease, Dystonia, Essential Tremor and Tourette’s Syndrome. A thanks to the organisers!

Dave’s Dystonia Walk

One of our members competed in the Melbourne Half Marathon to raise dystonia awareness and funds for the Brain Foundation for research into Dystonia. He raised over $6000! An exceptional achievement! Click link for more details → Dave’s Dystonia Walk. Visit our ‘Events’ page for events or updates during the year.

Social Media

Find us on Facebook

Follow us Twitter

Our Community Facebook Page

↑

1,918 likes

36% ↑

Like our Page Click thumb

Posts Reached 371,384 people

106% ↑

Our website is linked to our Facebook Community Page so people can find us. Due to the info from the assessment of our Facebook Page we will be making changes. We are hoping it will help to reach more people and increase awareness.

Our Dystonia images are the most favoured! Thanks to Lisa and Hariklia, our Admins, for composing the images.

Tips Searching for Info

1. Trust It or Trash It?

Online tool to help you assess the quality of info you are viewing. www.trustortrash.org/

2. Medicine Advertisements

10 things to look out for

3. Images and content

Golden rule - ask to copy/use.

Our Website — Snippets ADSG Admin volunteer their time to maintain the website, make it easily accessible and provide updates. Visits to the website are increasing and more people are finding our site. Views increased by 8%. More links to info were added and we received requests by Health Professionals to include their details to our ‘Movement Disorder Specialists‘ page.

Visit us www.australiandystoniasupportgroup.wordpress.com

Popular Pages/Posts

Movement Disorder Specialists

How is Dystonia Diagnosed “Can’t hold my head up!”

A turning toe ADSG Quarterly Review Nov

How did they find us?

Popular referrers

Google Search Facebook

Brain Foundation Australian Dysphonia Network

Popular FB Post World CP Day

Infographic Dystonic CP causes involuntary muscle spasms and unwanted movements. It is usually in combination with high & or/low muscle tone. This is described as

CP with Dystonia.

Research Links Sensory trick in upper limb dystonia

Dopa-responsive dystonia

DYT-GNAL—GeneReviews

Reduced vision-related quality of life in people living with dystonia

Botulinum Toxin

PBAC November Meeting

Feedback was submitted to the PBAC relating to BoNT. The view expressed was to extend the indications on the PBS for Botulinum toxin, specifically for lower limb symptoms due to Dystonia and spasticity. Many thanks to members who provided their thoughts and feedback. The full summary of outcomes will be available to view online in March 2019. Related info:

PBAC Public Summary - July 2018 Meeting

DUSC - Botulinum toxin for spasticity and dystonia (May 2018

For noting - Draft Report Neurosurgery and Neurology Clinical Committee (MBS)

DBS recommendations were made and a new MBS item was proposed for Botulinum toxin treatment of focal dystonia (nonspasmodic).

Information Have you missed info and

updates during 2018? Read our quarterly reviews!

Quarterly Review November 2018

Quarterly Review August 2018

Quarterly Review April 2018

More here The Studio 10 — Louise Maher-Bale at ADN

Self Care for the Holidays DMRF Webinar

This one is for all GPS Includes a video of Kristin's story — ADN

Ask the MDs — Diagnosis and Misdiagnosis of Spasmodic Dysphonia Short film ‘Dystonia’ — Musician with dystonia

Articles and tidbits Essential tremor treatment — Sydney nun first in southern hemisphere to undergo breakthrough procedure Dystonia, A Disorder Longing for More Therapies Stimulating the brain — without major surgery — Uni of Melbourne What is Dystonia and how does it relate to Parkinson's Disease? — APDA When Your Chronic Illness Affects Your Friendships —The Mighty The Dystonia Guide for Teens — DMRF Canada Dystonia Europe Newsletter (Winter) - Dystonia Research and news DMRF Newsletter — Social Support is Critical to Living Well with Dystonia, Origins of Dystonia and more!

More in our quarterly reviews and our Dystonia Research page. Clinical trials included!

Donate to dystonia research or causes