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
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 here→Dystonia Research