Have you missed updates and information relating to Dystonia?
Read further for a recap!
Voice Awareness Month and World Voice Day
Voice care and the importance of the voice in our everyday lives. This included awareness of Voice Disorders such as Spasmodic Dysphonia. Click links!
→ BBC Ideas video from the Rethinking disability – How to speak when you don’t have a voice
→ NSDA – Overview on Spasmodic Dysphonia by Dr Stacey Halum
→ World Voice Day – Be Kind With Your Voice: Top 10 tips!
Good Friday Appeal
Supporting or donating to care and research at the The Royal Children’s Hospital, Melbourne (RCH) → Donate to RCH Complex Movement Disorders Program!
World FND Week
Raising awareness about Functional Neurological Disorders (FND), a problem with the functioning of the nervous system and how the brain and body send and receive signals.
→ FND Hope – Functional Neurological Disorder (FND)
→ FND – Poster
→ Functional Dystonia
World Parkinson’s Day!
Dystonia and Parkinson’s disease are movement disorders that are closely related. Around 40% of people with PD experience dystonia as a symptom.
→ Shake it Up Australia – Dystonia and Parkinson’s disease
→ EPDA – Dystonia motor symptoms
Brain Awareness Week
Increasing public awareness of the progress and benefits of brain research, including Dystonia research.
→ ADSG – What is Dystonia
→ Brain Foundation – Donate to Dystonia research
Swallowing Awareness Day
Bringing attention to swallowing disorders and to connect people with speech pathologists, the professionals who can help → Dysphagia: A difficult diagnosis to swallow!
Rare Disease Day
Raising awareness of rare diseases! Dystonia is a neurological movement condition which affects adults and children and is often not well known → Rare types of Dystonia.
Upcoming Events and Meet ups!
→ Parkinson’s and Movement Disorder Patient and Carer Information Session – 13 May 2019
→ SA Dystonia Support Group Social Meet-Up – 26 May 2019
Presentations and Videos
Click links to view!
→ Suzanne Bayliss Talk | Oh Sing with Broken Voice My Dystonic Body
→ DMRF – DBS for Dystonia Part 1
→ DMRF Canada | Webinar for Parents of Children and Teens with Dystonia
→ DMRF – Solving the Dystonia Puzzle
→ Movement Disorders Clinical Practice – Video Abstract
Information and Articles
Click links to read!
→ DMRF – Dystonia Dialogue Newsletter Spring 2019
→ Parkinson’s UK – How to manage foot problems related to your Parkinson’s
→ GMA – Selma Blair, an actress reveals she has Multiple Sclerosis (MS) and suffering from spasmodic dysphonia
→ Global Dystonia Registry – supporting future dystonia studies, including clinical and research trials, through the collection of data on persons affected by dystonia
→ nzhearald – Why Kiwi hitmaker Jenny Morris can’t sing anymore
→ DMRF – Dystonia: Common Misunderstandings
→ Brain & Life Magazine – Ease Awkward Social Situations
Click links to direct you to papers!
→ Cochrane – Deep brain stimulation for people with involuntary posturing, or dystonia
→ BMC Journal of Clinical Movement Disorders – Review Medical treatment of Dystonia
Updates for Noting
Medicare Benefits Schedule (MBS) Review Taskforce – Report by the Neurosurgery and Neurology Clinical Committee
The MBS review Taskforce has made recommendations to the Government and was endorsed. The report included a new item proposed – Botulinum toxin for focal dystonia. However in order for the new item Botulinum toxin for focal dystonia to be listed on the MBS, assessment by the Medical Services Advisory Committee (MSAC) is still required. This sounds promising and ADSG will monitor the progress of this. The final report or recommendations will be added to the MBS review webpage soon. The revised report has the ‘non-spasmodic’ term removed after ADSG communicated with the MBS review team. This will ensure that some patients are not being excluded from reimbursement for effective and appropriate treatment, especially patients with Focal Dystonia.
Links to further details
→ MBS Review Taskforce reports
→ Recommendations to Government from the MBS Review Taskforce
Our Facebook has reached 2000 likes! Thanks again to everyone who has liked and shared our page. Let’s all continue to educate and help raise Dystonia awareness.