2024 – Release of new book ‘Tremor, A movement disorder in a disordered world‘
Award-winning Australian writer and journalist Sonya Voumard shares her deeply personal and candid account of living with Dystonia in her latest nonfiction work Tremor, A Movement Disorder in a Disordered World. A sensitive yet unflinchingly honest narrative, the book sheds light on Voumard’s decades-long journey navigating the world with her multi-focal condition worsening and undiagnosed. From her early teenage years, she experienced an unexplained hand tremor, which escalated with age and was later compounded by neck spasms and mental health challenges, including anxiety. As a high-profile political correspondent in Canberra (and other cities), she faced the pressures of an intense career while managing (and often covering up) her mysterious and troubling symptoms. For years, medical practitioners treated each ailment in isolation, until neurologist Dr Stephen Tisch in 2019 finally pieced them together as Dystonia. In 2020 Voumard underwent Magnetic Resonance-guided Focused Ultrasound Surgery (MRgFUS), an incisionless brain procedure to help correct one aspect of the condition, the tremor in her right hand. Tremor, which recently won the 2024 Finlay Lloyd Nonfiction Award, will be of interest to all who have experience of Dystonia, either directly or indirectly.
Sonya’s book was launched in November 2024 in Sydney and Canberra and can be ordered through publisher Finlay Lloyd.
Sonya’s other books are:
‘Skin in the Game: The pleasure and pain of telling true stories’ (Transit Lounge, 2018). This can be ordered here.
The Media and the Massacre: Port Arthur 1996-2016 (Transit Lounge, 2016). This can be ordered here.
Political Animals (Ginninderra Press, 2008). This can be ordered here.
2023 – Doctor with Musician’s Dystonia
In this article from September 2023 a doctor who is a flute player describes the impact of musician’s dystonia and treatments. DNA is providing a link to this article as it may be of interest to people with all forms of dystonia. We are not providing it as an endorsement of the Farias treatment. Read the article here.
2023 – ABC 7.30 Report story on Sydney trial for focal dystonia
On the 26th June 2023 the ABC 7.30 Report featured a story on a violinist who underwent MRI guided focused ultrasound (MRgFUS) for focal hand dystonia which was a success. Watch the story here.
DNA is now an Information Partner of Healthdirect Australia
On the 5th May 2023 DNA was approved as a Trusted Information Partner of Healthdirect Australia, the national virtual public health information service. Click here to view our profile page.
Short Film – Dystonia
Watch the short film ‘Dystonia’ by Corgipaw Films about a musician who is diagnosed with dystonia and is told she can no longer play music. The film can be watched via the Corgipaw Films website. The film is inspired by the experience of musician Margot Dean who has recently had a bassoon music piece published. See here to listen and to read Margot’s bio.
2022 – 30 year anniversary of New Zealand Dystonia Patient Network
DNA wishes to congratulate the New Zealand Dystonia Patient Network on their 30th Anniversary. Well done to all involved!
2021 – Proposed Funding for Movement Disorder Allied Health NSW
The NSW Liberal Party announced that $8.6 Million would made available in the 2021-2022 financial year to fund positions to help people with Parkinson’s disease and movement disorders. This will be rolled out over 4 years. DNA wrote to the NSW Health Minister to ensure that people with Dystonia, the third most common neurological movement disorder, would benefit from this initiative. We have been involved in some meetings with NSW Health and are awaiting a status update from them about the initiative. Please note that this initiative only relates to NSW.
2021 – Dystonia Network of Australia Dystonia YouTube channel
Our new YouTube channel commenced on the 6th May 2021. A number of videos are ready for viewing and more will be added in the future. Please view and leave comments if you’d like.
2020 – Dystonia Awareness Week – The Hills Radio Interview Adelaide
Adelaide Hills Radio as well as some other country radio stations have been running our ad for dystonia awareness week. Chris Carpenter, General Manager of Adelaide Hills Radio, interviewed Kerrie & Laraine on the 3rd September 2020 about Dystonia and DNA. Please excuse the audio glitches.
With Permission of The Hills Radio Adelaide
2019 – ABC Health Report on Dystonia
Dystonia Network of Australia Inc. (DNA) is thrilled to announce as part of the Dystonia Awareness week the segment on the ABC Health Report on Dystonia is now playing. DNA members Robyn and Paul are the patients who are telling their Dystonia stories and our DNA Advisory Board Members Associate Professor Victor Fung MDS Neurologist spoke on Botox and its effective treatment of Dystonia and how it works by altering messages from the brain, Doctor Stephen Tisch MDS Neurologist spoke about Movement Disorders and what they are, he also spoke on new MRI called a DTI which can show Dystonia the gapes in gene research, and how patients with the gene can sometimes have no symptoms and others without the gene can have the symptoms and finally how therapies are sometimes ahead of understanding conditions and Dr Lynley Bradnam Professor of Physiotherapy (NZ) spoke about Dystonia and what it is and different types of the condition also DBS surgery and how in the early days it was thought it was a hysterical condition and advances in imagery. The link to listen is here.
2019 – Brain Mapping study could pave way to treat neurological disorder
DNA member Dr Daniel Corp has led a research study at Deakin University that has discovered parts of the brain that may cause cervical dystonia and could pave the way for a non-invasive, targeted treatment. Read the Deakin University media release here.
2018 – First patient in southern hemisphere to undergo new non-invasive procedure for severe tremor
A Sydney nun has become the first person in the southern hemisphere to undergo a non-invasive treatment using MRI guided focussed ultrasound (MRgFUS) at St Vincent’s Hospital in Sydney. This was performed by Doctors Stephen Tisch and Ben Jonker. Read about it here on 9 News.
This article is reproduced with permission of St Vincent’s Hospital Sydney and Dr Stephen Tisch.
2014 – Dystonia Europe at Dystonia Patient Event, Melbourne
On the 11th January 2014 Dystonia Europe Executive Director Monika Benson attended a dystonia patient event held at the Cerebral Palsy Education Centre in Glen Waverley, Melbourne. Monika had travelled to Australia for her daughter’s graduation. About 50 people with dystonia and their family members participated and guest speakers included Monika (the work of Dystonia Europe), Dr Lynley Bradnam (transcranial magnetic stimulation for cervical dystonia), Kerrie Jackson and Laraine McAnally (founders of DNA), Lee Pagan (ADSG Facebook Group), and Suzanne Bayliss and Jan Hoffman (support groups). Thanks go to Lee Pagan, Hariklia Nguyen, Lisa McInnes, Sue Kennedy and Nadine Schnabel for their work in organising the event.
2013 – Non-invasive brain stimulation for Dystonia
Dr Lynley Bradnam was an Associate Professor of Physiotherapy at Flinders University. Her interest in dystonia began while she was studying for her PhD. At that time her interest lay in understanding the changes in the Bain that seemed to contribute to dystonia. Since arriving in Adelaide in 2011 Dr Bradnam has focused on dystonia, in particular the role of the cerebellum and whether non-invasive stimulation could be used as treatment. Her work has received two Brain Foundation Australia grants and was featured on the ABC.
Recently Dr Bradnam has become interested in studying how cervical dystonia affects function, including vision, balance, walking and cognition. She developed a questionnaire to help identify if movement related fear is a feature of dystonia for some people. Dr Bradnam would like to see better education for physiotherapists to understand dystonia and offer effective and researched-based treatment interventions. She has recently been appointed as Professor of Physiotherapy, Graduate School of Health, University of Technology, Sydney. Read about Dr Bradnam’s work in an article in the Sydney Morning Herald here.
Page updated 12 November 2024
