ADSG Yearly Review 2018 – Supporting, Linking and Sharing

It was another productive year of supporting, linking and sharing.

Thank you to ADSG members who have helped to raise awareness of Dystonia and to networks who have connected, collaborated with or supported ADSG. Here is a review of 2018!

Please click image of review to read.

ADSG Yearly Review 2018 – Supporting, Linking and Sharing. Click to view

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ADSG Quarterly Review November 2018

 Information and events that relate to Dystonia you have missed!

 


It was Dystonia Awareness Month in Sptember!

ADSG members provided quotes to raise Dystonia awareness and understanding.
Check out our poster! → It’s Dystonia Awareness Month 2018! A Time To Raise Awareness

Dave’s Dystonia Walk – Raised over $6000 towards Dystonia Research!  
One of our members competed in the Melbourne Half Marathon to raise dystonia awareness and raise funds for the Brain Foundation for research into #Dystonia.
Link to his page  Dave’s Dystonia Walk 14th October 2018

Others participated in the melbourne Marathon too! Well done to all of them! Link to article about Xabian Patterson, one of the participant’s  Xabian’s mammoth finish.

Drop the Jargon Day #dropthejargon 2018
A day to use plain language and not Jargon, technical terms or acronyms which make it difficult for people to understand and use information. We shared some acronyms relating to Dystonia in a poster with the definitions to help you! Link  Drop the Jarogn Dystonia Poster

Speech Pathology Week 2018 – Communication access is communication for all!
Dystonia can affect your voice, speech or swallowing. Link to more info Speech Pathology Week Post 

Be Medicinewise Week 2018
It is important to discuss Dystonia related medications or complementary medicines with a doctor and pharmacist, especially why given and what side effects you should expect. Link to more info → Be Medicinewise Week Post

World CP Day Inforgraphic
Raising awareness and recognising those with dystonic CP and dystonia. Link  CP and Dystonia Infographic

Upcoming Events and Meet Ups

Healthy Mothers Health Families free day workshop – 8th December 2018
HMHF is a program for women seeking to achieve better health, wellbeing and empowerment for themselves as they manage family duties
 → Healthy Mothers Healthy Families | CPEC – The Cerebral Palsy Education Centre.

Queensland End of Year Gathering  – Sunday 25 November 2018
Further details and to RSVP → 
https://wp.me/P57Axa-1E

The short film ‘Dystonia’ is now available to view online!
True story of Margot Chiverton, an ADSG member. She was a highly successful musician, before she reluctantly left after developing Dystonia. Link → Short Film ‘Dystonia’

Benign Essential Blepharospasm Research Foundation 2018 Symposium
Seven formal presentations on topics relevant to blepharospasm patients and Q&A sessions.
Link → Videos from the 2018 Symposium 

The Rare Condition That Stole This Woman’s Voice on Studio 10!
“For people with SD, it takes great effort and strain to speak.” Link → Studio 10 Segment 

DBS Dystonia Patient Sketch Animation – Boston Scientific Link  Deep Brain Stimulation for Dystonia

→ Navigating Dystonia and Depression
Depression and anxiety are well-known challenges for many who suffer from any form of dystonia.

 What’s it like to live with a voice disorder?
ABC RN segment about #voice disorders, including an interview with Louise Maher-Bale from the Australian Dysphonia Network who has #SpasmodicDysphonia.

→ A Turning Toe – A personal Dystonia story
“Pain in my left foot, for no apparent reason. This resulted in the toes of my left foot twisting upwards. At times my foot would also rotate, and a couple of times the whole leg ‘locked up’.

→ Dental Visits Made Easier
For many people with neurologic conditions, a visit to the dentist produces extra anxiety. 

→ Nature Reviews Illustrated PrimeView PDF
Epidemiology, mechanisms, diagnosis and management of dystonia

→ DMRF Promise & Progress Science Report
Myoclonus Dystonia Research Update, Technology Advancements in Deep Brain Stimulation and more! 

→ Treatment of Dystonia Ebook 
Provides an effective guide to this challenging group of disorders, offering an overview of the current and emerging treatment options for all manifestations. Treatments for the many forms of dystonia differ substantially in pediatrics and adults – both are covered in detail in this book.

→ MSD Manual Consumer Version – Dystonia
Dystonia is characterized by long-lasting (sustained) involuntary muscle contractions that may force people into abnormal positions—for example, causing the entire body, the trunk, limbs, or neck to twist.

→ Prevalence and incidence of rare diseases: Bibilographic data
Diseases listed by decreasing prevalence, incidence or number of published cases. Inlcudes Dystonia. The data published in the document are worldwide estimations, or European estimations if a worldwide estimation is not available.

→ Queensland Brain Institute – What is a neuron?
They are the fundamental units of the brain and nervous system

 


Drug utilisation sub-committee (DUSC)  
Botulinum toxin for spasticity and dystonia: utilisation analysis Full Report PDF

The Drug Utilisation Sub Committee (DUSC) of the Pharmaceutical Benefits Advisory Committee (PBAC) assesses estimates on projected usage and financial cost for medicines. It also collects and analyses data on actual use (including in comparison with different countries), and provides advice to PBAC. The DUSC reviewed the utilisation of botulinum toxin type A supplied through the Pharmaceutical Benefits Scheme (PBS) for the treatment of spasticity in patients with cerebral palsy or following a stroke, and for spasmodic torticollis, blepharospasm and hemifacial spasm.

Centre for Genetics Education → Updated fact sheet on life insurance products and genetic testing in Australia
The Centre for Genetics Education has just updated its fact sheet on Life insurance products and genetic testing in Australia.

European Journal of Neurology → Dystonia: diagnosis and management
F1000Research Review  Recent advances in understanding and managing dystonia
National Spasmodic Dysphonia Association (NSDA)  Spasmodic Dysphonia Past Present and Future NSDA
Developmental Medicine and Child Neurology → Deep brain stimulation for pediatric dystonia: a meta-analysis with individual participant data 
International Parkinson and Movement Disorder Society → Resting‐state basal ganglia network codes a motor musical skill and its disruption From dystonia 
European Journal of Neurology → Spread of dystonia in patients with idiopathic adult‐onset laryngeal dystonia
International Parkinson and Movement Disorder Society → The Phenomenology of Functional (Psychogenic) Dystonia

Visit our Dystonia Research Page for trials and studies!

Dystonia InformationJoin our GroupFind us on Facebook Australian Dystonia Support GroupFollow us us on Twitter Australian Dystonia Support Group

ADSG Quarterly Review August!

It’s ADSG’S 7th Birthday!

Celebrating 7 years of supporting Australians living with Dystonia. Read more here  The Australian Dystonia Support Group has come a long way!

National Pain Week – 24-30 July 2018

Each year Chronic Pain Australia, the national voice of people living with chronic pain, organises National Pain Week to champion the needs of the many Australians living with some form of chronic pain. This includes pain caused by Dystonia.  This is an opportunity to discuss pain management with your doctor. Read more here → National Pain Week 2018! Do you live with chronic pain?

Premiere of ‘Dystonia’ the short film

The Premiere of the short film ‘Dystonia’ screened in June 2018. Insight into the world of ‘Dystonia’, and the life of a musician who must turn her situation around in the face of a devastating fate.  DVD coming soon! View tailer here → ‘Dystonia’ short film

International Clinical Trials Day – Research is the Key! For finding treatments and cures

We acknowledge the contributions from the patients and the medical profession who work together to help find treatments, and possibly a cure for Dystonia and other conditions. Visit our website to participate in a Dystonia Clinical trial here → Dystonia Research or clinical trials

Link to post here International Clinical Trials Day

The Dystonia Society UK – Dystonia Awareness Week!

It was the UK Dystonia Awareness Week in May and it was a great opportunity to share information relating to Dystonia. Even though the awareness week is over you can still get involved to help raise awareness of dystonia! You can also visit our website to share links to information, a flyer or poster here → ADSG information

Upcoming events!

Speech Pathology Week 19- 25 August 2018

Speech Pathology Week seeks to promote the speech pathology profession and the work done by speech pathologists with the more than 1.1 million Australians who have a communication or swallowing disorder that impacts on their daily life. This would include people with Dystonia.  Link for updates or more upcoming events here → Events

Dystonia Awareness Month/Week

In September it will be a great opportunity to create further awareness and understanding of Dystonia. Updates coming soon! Visit our awareness website page here → Dystonia Awareness Month

Dave’s Dystonia Walk 14th October 2018

This October, Dave, a member of our group, is going to compete in the Medibank Melbourne Marathon Festival. He will be walking 21.1kms in this event to raise awareness for sufferers of Dystonia. Visit his Facebook page for updates here → Dave’s Dystonia Walk Facebook Page

Funds raised will go to the Brain Foundation towards Dystonia research. To donate to this vital cause please click link here → Everyday hero Dave’s Dystonia Walk

Good luck Dave and thanks for raising awareness!

2018 NSDA Symposium Video → SLP Se-in Kim presents “The Role of Speech Therapy for Spasmodic Dysphonia (along with Muscle Tension Dysphonia and Vocal Tremor)” and more here  2018 NSDA Symposium Summary

Dystonia Europe → Living well with dystonia Video

Dystonia Europe → Professor Brigitte Girard explains why you should use MyDystonia

Botulinum toxin for spasticity and dystonia – Drug Utilisation Sub Committee (DUSC) Outcome Statement

DUSC reviewed the utilisation of botulinum toxin type A supplied through the Pharmaceutical Benefits Scheme (PBS) for the treatment of spasticity in patients with cerebral palsy or following a stroke, and for spasmodic torticollis, blepharospasm and hemifacial spasm. Full report will be available by October.  Link to brief statement here → Drug Utilisation Sub-Committee Outcome Statement 31 May 2018

My Health Record – Opting Out

This year, you will automatically get a My Health Record unless you opt out. If you don’t want a My Health Record, complete the online process by 15 October 2018. You will need your Medicare card and driver licence (or other identification) to complete the opt-out process.

Important note: If you prefer not to opt out and a record is created you will need to log in or have access to the system and set your preferred privacy settings.

If you would like to opt out → Opt out of My Health Record

Medical devices Patient information leaflets

The Therapeutic Goods Administration (TGA), representatives from public health groups and other related networks met on 1 March 2018 to discuss the introduction of patient cards and consumer device information (patient information leaflet) for all permanently implantable medical devices. This may include Deep Brain Stimulation devices. This is in response to concerns from consumers about the absence or limited information provided to consumers about the medical device implanted during surgery. The leaflets will be composed in plain English and the initiative will be introduced in Australia in a staged approach, beginning from 1 December 2018. View more information here → TGA Patient Medical Devices Information Leaflets

Is registration of clinical trials mandatory in Australia or New Zealand?

The 2007 revision of the Australian Code for the Responsible Conduct of Research which was jointly issued by the NHMRC, the Australian Research Council and Universities Australia also contains a clause regarding prospective trial registration. Clause 4.10 of this document states that “researchers must register clinical trials with a recognised register to promote access to information about all clinical trials.”

This is the right step for patents having access to clinical trials. A list of trial registries here → Australian Clinical Trials

Need a Doctor?

See your GP, visit the Health Emergency Options website to find a doctor in the QLD area, an after hour service or call a home doctor. More information here → http://www.healthemergencyoptions.com.au/

Genioz Genome Study (National) Update

Genioz investigated the Australian public’s expectations of personal genomics The Genioz study. The study included forums with the public in several Australian capital cities. For an update click link to read the Genioz publication on Stage 1 of data collection here → Australians views on personal genomic testing: focus group findings from the Genioz study.

For further updates → Genioz Research Findings

Botox is easing arm tremors → Study helps sufferers of neurological conditions at Westmead Hospital

The Pulse → Hope for those with disabling tremor

DMRF  Targeted Gene Panel May Provide Cost-Effective Diagnostic Tool for Movement Disorders

Bionics Institute → Parkinson’s disease sufferers able to sleep through brain surgery (DBS) after breakthrough!

Anupam Datta Gupta, David H Wilson, Queen Elizabeth Hospital → Botulinum toxin for spasticity: a case for change to the Pharmaceutical Benefits Scheme

Queensland Brain Institute → What are neurotransmitters?

BMC Biomed Central  Dystonia – a heterogeneous clinical and treatment landscape

Medium Parkinson’s UK → Dystonia and Parkinson’s: ask the expert

National Disability Insurance Scheme → A GP & Allied Health Professional’s guide to the NDIS

 Irish EDS and HMS → Dear Doctor…. Patient’s Perspective Leaflet

Patient Worthy → How You Look is Not a Measure for How You Feel

CNN Health → The radio man without a voice

Society for Neuroscience → The Brain Facts Book

The Dystonia Society → Dystonia Matters 2018

International Parkinson and Movement Disorder Society  Moving Along Newsletter

The Dystonia Society → Paroxysmal Dystonia

International Parkinson and Movement Disorder Society → Pain processing in functional and idiopathic dystonia: An exploratory study

Parkinson’s News Today → Earlier Parkinson’s Onset and Dystonia Symptoms Seen in GCH1 Mutations in Study

Harvard Otolaryngology: New Findings in Dystonia  Researchers investigate the mechanisms of focal laryngeal dystonia, seeking diagnostic and therapeutic opportunities

The Lancet Neurology → The dark history of early deep brain stimulation

More dystonia research or clinical trials hereDystonia Research

Dystonia InformationJoin our GroupFind us on Facebook Australian Dystonia Support GroupFollow us us on Twitter Australian Dystonia Support Group

ADSG Connecting and Supporting – A look back at 2017!

It was another active year for ADSG connecting with networks, supporting people with Dystonia and raising awareness.

To read more please click image or link to view recap of 2017!

ADSG Connecting and Supporting – A look back at 2017

Click to view and read more! ADSG Connecting and Supporting – A look back at 2017 PDF

Get Ready For Dystonia Awareness Month In September!

Dystonia Awareness Month 2017

Dystonia Awareness Month – Seek permission to use or copy this image

Further awareness of this Neurological Movement Disorder is the key to a future cure! Please help those affected by joining us and helping to spread the awareness of #Dystonia during September.

Visit our ‘recent news’ page for updates! If you would like to help spread awareness during the #dystoniaawareness month there are many ways you can achieve this. 

  • Have a Dystonia awareness display at a pharmacy or chemist
  • Leave Dystonia flyers or posters at a clinic or Hospital
  • Add a Dystonia article or story in the newspaper
  • Share information on Dystonia on a radio channel
  • Have a sausage sizzle at Bunnings or another venue and share information on Dystonia
  • Organise a public conference or event to raise awareness of Dystonia
  • Share website page and other Dystonia info on Facebook and Twitter
  • Ask a Hosptial or Clinic to add information on the Dystonia awareness month on their medical display screens
  • Share the ADSG Dystonia Awareness Video 
  • Make it the month to donate to Dystonia research or to a cause relating to Dystonia

Visit our Dystonia Awareness Page for more information and publications!

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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It’s Dystonia Awareness Month once again! Spread the word!

Dystonia Awareness Month September
What will you do to help us spread the word in the community?

Further awareness of this Neurological Movement Disorder is the key to a future cure! Please help those affected by joining us and helping to spread the awareness of Dystonia during September.

Watch the ‘recent news’ page for updates! If you would like to help spread awareness during the awareness month there are many ways you can achieve this. 

  • Have a Dystonia awareness display at a pharmacy or chemist
  • Leave Dystonia flyers or posters at a clinic or Hospital
  • Add a Dystonia article or story in the newspaper
  • Share information on Dystonia on a radio channel
  • Have a sausage sizzle at bunnings or another venue and share information on Dystonia
  • Organise a public conference or event to raise awareness of Dystonia
  • Share the Blog page and other Dystonia info on Facebook and twitter
  • Ask a Hosptial or Clinic to add information on the Dystonia awareness month on their medical display tv
  • Make it the month to donate to Dystonia research or to a cause relating to Dystonia

Dystonia Awareness Month tips

Dystonia awareness flyers or posters

Donate to Research or a Dystonia related cause

Happy New Year! Recap of ADSG 2015

Recap of ADSG 2015

It was a busy year for ADSG. We now have about 400 Members!

Here is a recap of 2015!


ADSG Facebook Community PageLaunch 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
Support Meetings

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


Australian Dystonia Support Group CardDesigned 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. 

ADSG Card

 


Dystonia Awareness Month Australia cover imageDystonia 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


Parkinson's Conference Dystonia session Dr LynleyThe 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


Parkinsons's QLD

Click on image or link to the Dystonia article in their Magazine – “Connections” Magazine

Parkinson’s Queensland

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 Dystonia

Connect Neuro Physiotherapy

Collaborated with Connect Neuro Physiotherapy to provide info on Neuro Physio.

Link to article – Neurological Physiotherapy: The Who, What and Why this is so important for Dystonia 

Find a Physio Link

 

 


Botulinum toxin new arrangements

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

 


What to look out for in 2016 ADSG
ADSG What to look out for in 2016! David Castillo DominiciADSG 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.

Newsflash! Dystonia Awareness in South Australia!

On Sunday 8 November 2015 Margot Chiverton, an ADSG member who also is a member of the SA Dystonia Group, organised a Dystonia Awareness stall at a local Market.

Awareness materials were displayed to raise more awareness of Dystonia, and to raise funds to be donated to research into understanding the cause and finding a cure for Dystonia.

Dystonia Awareness Market Stall

Dystonia Awareness Stories All images cannot be used without permission

ADSG members shared their stories for the display to give the community an understanding what it is like living with Dystonia. To read some of the stories shared, as well as Margot’s story, please click on link provided. –  Stories

She did an amazing job and we thank her for all the effort she has put into it!

Donate, Dystonia, Brain FoundationWant to know how to donate to Dystonia research? Click donate image to direct you to page 

 

Read updates about Dystonia in the Brain Foundation’s Newsletter!

Brain Foundation Brainwaves Newsletter Winter 2015

The Brain Foundation’s Newsletter – Brainwaves Winter Edition 2015 

In this edition you will find details on Dystonia research, the Dystonia Awareness Month and other related info on Dystonia.

Please click on large image provided to open up or read the Newsletter.