ADVISORY BOARD APPROVED BROCHURES  
PROVIDED & WRITTEN BY DNA Inc      
                                                                                                                                                                                                                         

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

 

        

 

The following publications can be downloaded.

Not a member? Join today to assist us to continue to provide dystonia resources.

https://www.dystonia.org.au/wp-content/uploads/2020/09/Fact-Sheet-1-Information-for-the-Carers-In-Dystonia-Copy.pdf​

Brochure-What-is-Dystonia
Brochure – What is Dystonia

Brochure-Writers-Cramp

Brochure – Writers Cramp

 

Brochure – Blepharospasm

 

Brochure-Cervical

Brochure – Cervical Dystonia

Brochure-Spasmodic-Dysphonia

Brochure – Spasmodic  Dysphonia

Brochure-Genetics

Brochure – Genetics in Dystonia


Brochure – Deep Brain Stimulation

Brochure – Generalised Dystonia

  

Brochure – Psychogenic Dystonia

 

Brochure – Tremor in Dystonia

 

September 2021.

 DNA now has a dedicated You Tube Channel.     Dystonia Network of Australia Inc. – YouTube

 

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 Dystonia 0.30 sec.  Radio Ad

 

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

 

Australian Dystonia Awareness Month 1st – 30th September 2021 Inclusive.

 Dystonia Network of Australia Inc. (DNA)  

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 You Tube Channel.https://www.youtube.com/watch?v=t0xZtbDaLuY
Melanie Boyce, PhD candidate and senior neurological physiotherapist will be presenting her research into Dystonia. This presentation is now on the DNA You Tube Channel. https://www.youtube.com/watch?v=Q0ED7RCgjF4
Dr Florence Chang will present Musicians’ and Forearm Dystonia. This presentation is now on the DNA You Tube Channel. https://www.youtube.com/watch?v=bIgvkh8oBvI
We will send invitations and more information soon. Don’t worry if you can’t make it as there will be recordings that we will send out.
As we do every year in September, we will be sending packs of brochures out to 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 this month on social media.
As always, we are happy to send brochures and DNA tools if you are able to 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.au or you can Email us mailto:info@dystonia.org.au

Hope you are all coping as well as you can during lockdown. Keep safe.

Many thanks & warm Regards,                                                                                                                                                                Kerrie, Laraine & the DNA Committee.

 

 

Dear all, 

for those of you who haven’t heard this, here is a link to Dr. Alex Lehn’s talk and Q&A in 2018 on Functional Neurological Disorders (FND), an umbrella term which includes functional (psychogenic) dystonia.  It’s quite long but really interesting. Dr. Alex Lehn is a neurologist in Queensland and an expert in FND. His ideas on understanding and treatment of this perplexing condition have influenced the care of people with this diagnosis. He also refers to a book, written by a nurse, that would be good for those of the members that are health professionals and the book has free access.

As with any YouTube podcast you may have to get rid of an ad every now and then, and we would advise using ear phones or having your computer audio at high as Dr. Lehn has a soft voice but it is a very worthwhile broadcast with lots of good Q&As in the second part.

 

 

Dystonia Network of Australia Inc. (DNA) is the National Peak Body for All Types of Dystonia.   

https://www.healthdirect.gov.au/australian-health-services/23030054/dystonia-network-of-australia/services/leura-2780-denman 

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)

ICD  Classification lnternational  Statistical  Classification  of  Diseases and  Related Health Problems 
(lCD),  a  medical classification list by the World  Health Organisation (WHO). lt contains codes for  diseases,  signs  and symptoms,  abnormal  findings,  complaints,  social circumstances,  and external  causes  of injury or diseases.
Vl Disease of the nervous system.
G20-G26 Extrapyramidal and movement disorders
G24 Dystonia.

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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