Dystonia Network of Australia Inc.
Providing a pathway to support, information, literature and community awareness for adults and children living with dystonia and their carers and health providers.
- To provide appropriate, researched information for adults and children with dystonia, their carers and interested health providers.
- To increase community awareness of the condition.
- To ultimately fund seminars and assist with research into dystonia.
Dystonia Network of Australia Inc. (DNA) is pleased to announce Australia’s Dystonia Awareness Month on the Government Calendar 1st – 30th September 2022 inclusive. Stay tuned to our press release and news stories pages.
Dystonia Network of Australia Inc. (DNA) Awareness Month 2021: Dear all, please celebrate Dystonia Awareness Month with us. We will not be letting our lockdown dampen our spirits. We have three new webinars for this month:
Dr. Tjrk Lagrand, who is currently working with Dr Alex Lehn will be presenting Functional Neurological Disorders, including Functional Dystonia. This presentation is now on the DNA YouTube Channel. https://www.youtube.com/watch?v=t0xZtbDaLuY
Melanie Boyce, Ph.D. candidate, and senior neurological physiotherapist will be presenting her research into Dystonia. This presentation is now on the DNA YouTube Channel. https://www.youtube.com/watch?v=Q0ED7RCgjF4
Dr. Florence Chang will present Musicians’ and Forearm Dystonia. This presentation is now on the DNA YouTube Channel.
As we do every year in September, we send out packs of brochures out to MDS neurologists in all states so that patients can access them. Please let us know if you would like a pack sent to your specialist.
The amazing colleagues of one of our Victorian members have arranged, a morning tea, plant sale, and a virtual Walkathon to celebrate Awareness month. If you would like to participate in this event and read a little of Wendy’s story and the fantastic activities her colleagues are achieving for Wendy and Dystonia Awareness. Click on the link below.
We have attached a revised awareness snap and ask that you consider spreading it on social media. As always, we are happy to send brochures and DNA tools if you can visit community centres and doctors’ surgeries. For more information go to our: Press Release and News Stories pages on our web site www.dystonia.org.auor you can Email us mailto:firstname.lastname@example.org
DNA now has a dedicated You Tube Channel. Dystonia Network of Australia Inc. – YouTube
Hope you are all coping as well as you can during the lockdown. Keep safe. Many thanks & warm Regards, Kerrie, Laraine & the DNA Committee.
23/09/2021 Dear All,
The Advocate Podcast: Monash University rescued Afghan academics and conversation on Dystonia Awareness Month on Apple Podcasts
Show The Advocate Podcast, Ep Monash University rescued Afghan academics and conversation on Dystonia Awareness Month – 22 Sept 2021
Our deepest appreciation to the Advocate Kerrie, Laraine and the DNA Committee.
Australian Dystonia Awareness Week 2020 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 & I last Thursday 3rd September 2020 about Dystonia and DNA. We won’t be giving up our day jobs any time soon but it went pretty well except for a couple of audio glitches.
With Permission of The Hills Radio Adelaide.
DNA Australian Dystonia Awareness Week 0.30 sec. Radio Ad
Dear All, today is the beginning of Dystonia Awareness Week. We have placed the link below for the Health Report on dystonia that the ABC aired last year during the 2019 Dystonia Awareness Week. It’s an excellent broadcast. Our thanks to Jake Morcam for contacting us prior to making this documentary and to his sensitivity, empathy and investigative skills.
Up to and during this week we are sending out packages with information on dystonia to neurologists and allied health. Can we ask you to spread the word about “What is Dystonia?” to at least one person every day of this week? Let us know how you go.
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, Associate Professor 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 Here is the ABC link: https://www.abc.net.au/radionational/programs/healthreport/living-with-the-mental-weight-of-dystonia/11491220
With Permission of James Bullen
Producer, Health Report, ABC Radio National Sydney, Australia
Dystonia Network of Australia Inc. (DNA) is the National Peak Body for All Types of Dystonia.
Dystonia Network of Australia Inc. is a member of the newly formed Australian Patient Organisation Network (APON) in May 2019 which has been formed to support the Australian Not-For-Profit Health Charities sector. https://www.cc-dr.org/networks/apon/ & https://www.cc-dr.org/networks/apon/aponmembers/
We are registered with the Centre for Community – Driven Research (CCDR) & the lnternational Centre for Community – Driven Research. (ICCDR)
Registered Charity ABN: 66 348 949 649 and Charitable Fundraising No: CNF/23669 with deductible gift recipient (DGR) status 2014 and a Medical and Multidisciplinary Advisory Board.
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