ADVISORY BOARD APPROVED BROCHURES  
PROVIDED & WRITTEN BY DNA Inc.

Australian Dystonia Awareness Week  5th – 12th September 2020 Inclusive.

Dystonia Network of Australia Inc. (DNA)  is pleased to announce    The Australian Dystonia Awareness Week on the Government Calendar for 2020 is 5th – 12th September inclusive. We are indebted to Grainger films who decided to professionally  produce the dystonia awareness radio ad for us pro-bono.  Stay tuned to our press release  and news stories pages on our web site for updates. For more information you can also email us  mailto:info@dystonia.org.au

 

 

                                                                                     Zoom Webinar on Deep Brain Stimulation (DBS) & Dystonia

Dear All,

Dystonia Network of Australia Inc. has the pleasure of announcing a zoom webinar on

Topic: Deep Brain Stimulation (DBS) & Dystonia

Speaker: Dr Julian Rodrigues, Movement Disorder Specialist (DNA Advisory Board)

Time: Friday 11th September, 2020  Canberra, Melbourne, Tasmania & Sydney 07.00pm.  Adelaide 06.30pm.  Perth. 05.00pm.

Please email us at info@dystonia.org.au for the zoom invitation.

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

AUSTRALIAN DYSTONIA AWARENESS WEEK  5-12  SEPTEMBER 2020

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. 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.

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

 

Dear all,

Dr Julian Rodrigues will give an update on Deep Brain Stimulation (DBS):

during Dystonia Awareness Week 5-12 September, DNA will be hosting Dr Julian Rodrigues, a member of our Advisory Board and Movement Disorder Specialist from Perth, via Zoom. Dr Rodrigues will give an update on Deep Brain Stimulation (DBS) and up to 100 people can join this talk and a few will have the opportunity to ask questions afterwards. We will send instructions when the date and time is confirmed (at present we are looking at 7pm on Friday 11 September 2020). However, if you think you would like to join the talk it would be best if you joined Zoom in the meantime. It is very easy and is free for participants. Let us know if you have any issues. When the time and date is confirmed you will have to let us know if you intend to join, so we can send the invitation and link. We are delighted to welcome Dr Rodrigues to take part in our awareness week.
Unfortunately, due to Covid restrictions DNA will not be able to hold our hospital awareness days this year. Hopefully we will be back to a semblance of normality in 2021.
DNA have been awarded a grant to add a dystonia library to the Careforia App and there is some money to respond to some requests for changes that you can send to us. If you have downloaded the app and are not using it let us know what would be needed for you to start using it again. If you are finding the reminders from Jesse too onerous go back to the care plan and space out your requests.

This App will eventually have many features – be there in the beginning and shape its journey. We have sent the Careforia flyer out to the many movement disorder specialists that are in our web site to broaden the awareness of the App.

Every Friday we will be sending out a “Careforia Tip of the Week” so if you find an easy way of getting to information and want to have it sent out to the membership just email us.

DNA Radio Interview:

For Adelaide members, Kerrie & Laraine are being interviewed by Chris Carpenter on Hills Radio, Adelaide 88.9 FM at 10.30 Adelaide time this Thursday 3 September 2020. He will be asking about DNA and our awareness week. You may also be already hearing our 30 minute audio ad which is playing for the next 2 weeks on the same station.  

 

                                  App For Dystonia 

18/04/20

Dear All,

DNA is delighted to inform you that in partnership with Careforia the Dystonia App has been launched and is available free of charge in Apple stores and Google Play. You can download the App called Careforia to your phone or for those of you who have issues with fine motor or hand tremor it can be downloaded on to your computer. Visit www.dystonia.org.au home page for this facility.  The links are on the App rolling banner.

Our thanks to the people who tested the App prior to launching. This App is available to everyone in Australia who has Dystonia or carers, family and friends who can fill in the data. We are looking into opening it out to New Zealand but waiting to find out about data storage to ensure it is safeguarded. 

If you have any issues with the App we encourage you to try to troubleshoot and/or use the help function which can be found at the top right hand corner of the screen in the blue icon with three white horizontal lines. Within this icon there are also other sections you should explore. If your issue can’t be resolved you can contact Kerrie on 0414 648 571 or Laraine on 0414 494 485.

As with any software launch it is only when multiple users start to use the App that issues and bugs can be identified and corrected, so let us know if you have any comments.

It will be really valuable if you can try to interact with Careforia every day to get used to the App and to respond to the reminders you will receive on a daily basis.  To facilitate your introduction to the App make sure you read all the instructions and use the help functions when necessary – we need to know they help reduce confusion. Play around with it and look at the extra options. Be assured that your data will be protected at all times.

We are hopeful that this App will provide an invaluable service to people with Dystonia in logging their daily symptoms and well-being, as well as providing a record to be shared with their clinicians.  The App will be developed over time and you will see changes when there are updates. We will be adding features such as research articles, educational information,

development of a Community Portal for people with dystonia, sleep/meditation module,  exercise module,  platform enhancements based on user feedback and more as finances permit.   We stress that the App will remain free regardless of enhancements.                                           

We will be making this App available to all the other dystonia organisations.

We hope that  you will take advantage of the Careforia App.

Warm Regards                                                                                                                                      Kerrie, Laraine & the DNA Committee

Kerrie Jackson            President DNA                                                                                            Laraine McAnally       Public Officer/Secretary

 

 


8/6/20
Dear all,
Dr Florence Chang sent us this helpful youtube video link. It is American but many of the principles are the same.
Coping Strategies forManaging Stress During Covid – 19

 

09/07/20                                 Research Project   

Dear All, 

Here is an invitation from Lynley Bradnam, Professor in Neurorehabilitation and a member of our advisory board, regarding a new research study.
Lynley writes:
” I have attached an invitation to participate in a new study that we are conducting out of Auckland. Its international and open to all types of dystonia. We are interested in the impacts of COVID-19 pandemic restrictions and lockdowns on access to medical care, including BTX injections, medications and allied health therapy.”

We encourage members to take part in this worthwhile global study.

Survey Introduction email invitation

 

With permission of Associate Professor Lynley Bradnam,

______________________________________

 

17/06/20                           Dystonia Related Pain Survey 

 Dear All,
We urge you to consider participating in this online Dystonia Survey by Dr Alana McCambridge:
INFORMATION SHEET AND CONSENT FORM FOR ONLINE SURVEYS:
Attached is a small advert that we are using for the study, and the survey link is here: https://protect-au.mimecast.com/s/eVzCCNLJ8nf9k3nlIm_a0w?domain=utsau.au1.qualtrics.com
Participants can also access the link via my twitter profile:
https://twitter.com/AlanaMcC_PhD/status/1272675107438129152?s=20
The final part of the survey is tricky to read as it tries to look into using the ‘new classification system’ for dystonia so if you are aware of people struggling to answer that section at the end they have the option of answering “I don’t know” as well.

Dr Alana McCambridge, PhD
Lecturer, Research RAO Physiotherapy
Graduate School of Health, Physiotherapy
University of Technology Sydney
T. +61 (02) 9514 7222
Building 20, level 6
PO Box 123 Broadway NSW 2007 Australia
uts.edu.au

With permission of Dr Alana McCambridge, PhD Lecturer UTS Sydney

 


13/3/20
Healthdirect Australia
Dear All,
Dystonia Network of Australia Inc. is an Information Partner of  Healthdirect Australia they have asked us to share this important information with all of our members and dystonia community.
The Coronavirus Health Information Ph. No: 1800 020 080 which provides non-clinical information about COVID-19.
The healthdirect helpline Ph: No: 1800 022 222 is triaging people calling with symptoms.
  • healthdirect website coronavirus (COVID-19) hub first point of reference for reliable information about COVID-19
  • social media assets optimised for Facebook, Twitter and Instagram (but also usable on other social media platforms) including:
    • infographics for where to get help, how to prevent infection, and mythbusting
    • videos explaining how to self-isolate – a 12-second version and an 18-second version
  • healthdirect Symptom Checker an online tool that allows people to check their symptoms using a simple self-guided process.
With permission of  Healthdirect Australia for information Partners.

_____________________________________

25/05 /20

The Department of Exercise Sciences, University of Auckland.

Project title: The effect of COVID-19 pandemic movement restrictions on physical activity and sedentary behaviour: a cross-sectional study.

Name and Affiliation of Principal Investigators: Dr Rebecca Meiring, Dr Silmara Gusso and Associate Professor Lynley Bradnam, Department of Exercise Sciences, University of Auckland.

My colleagues and I would like to invite you take part in a anonymous survey investigating the levels of physical activity and sedentary behaviour during COVID-19 alert level movement restrictions and to explore the relationships between motivations to exercise and physical activity.

You can access the participant information sheet and more information about the study by clicking here https://auckland.au1.qualtrics.com/jfe/form/SV_01DndnBuLEdE6mF which will take you to the landing page of the survey. Here you will be able to read more about the study and you will be asked to consent to taking part in the survey or not.

Please note that you must be older than 18 years to take part in this study.If you have any questions you are welcome to contact me:                                                                                                                                                                                                            Rebecca Meiring                                                                                                                                                          rebecca.meiring@auckland.ac.nz                                                                                                                                                                  Thank you for your consideration of our research project.

Approved by the University of Auckland Human Participants Ethics Committee on 19th May for three years. Reference number 024628.

With permission of Associate Professor Lynley Bradnam,
_______________________________________
Dear All,
Dystonia UK have given us permission to use the link below. Doctor Marie-Helene Marion, specialist neurologist, covers a brief history of dystonia and gives some advice and encouragement about how people can cope during this uncertain time for people who have now no access to botulinum toxin injections during the Covid-19 lock-down in the UK. She also answers questions from the audience.
Our thanks to the Dystonia Society UK.

 


11/05/20

THE CHF, are encouraging health consumers to have their say regarding the COVIDSafe tracing App. 

Good afternoon CHF Members

I would like to bring to your attention a survey that CHF has just launched on Australia’s Health Panel asking for consumer insights into the recently released COVIDSafe tracing app. As governments across the world grapple with how to respond to the COVID-19 pandemic, we believe it is more important than ever to ensure that the voice of the consumer is heard and helps to shape the Australian healthcare system.

As such, I would ask that you share amongst your Members and networks the launch of this COVIDSafe app survey and encourage people to sign up to Australia’s Health Panel at https://chf.engageable.net/auth/register. By joining Australia’s Health Panel they will not only be able to have their say on the COVIDSafe app but also other health issues and questions that arise over the coming months and years.

As you would be aware, on 26 April 2020 the Australian Government released the COVIDSafe app via the Apple and Android App stores shortly after proposing the idea. The app is intended to allow the tracing and finding of people who have been in close contact with someone with COVID-19.  Several million Australians have now downloaded the app and several key health bodies have supported it, although other expert groups such as the Law Council of Australia and Digital Rights Watch believe there are issues that need to be addressed.

We are keen to hear the firsthand impressions and opinions of members and consumers. I would appreciate you completing and circulating the survey widely.

Kind regards,

Leanne

Leanne Wells

Chief Executive Officer

Consumers Health Forum of Australia

With permission of Consumers Health Forum of Australia

 

Coles Online Priority Service (COPS)
Access is not available at this time, Coles is hoping to have this available soon.

                               
 
02/2020

Australian Dystonia support groups throughout Australia

 ACT Dystonia support group:

The next ACT Dystonia Support Group will be meeting on Saturday 15th February at the Southern Cross Club in Jamieson.  cnr. Catchpole and Bowman St., Jamieson at 12 / 12.30 for lunch.                                                                       Contact Details:  Kerrie Jackson: 0414 648 571.

Look forward to seeing you all again. Kerrie

 


26/01/2020
Australian of the Year 2020, ophthalmologist Doctor James Muecke
Dear All,  in the links below ophthalmologist Doctor James Muecke from Adelaide, an amazing man and the Australian of the Year 2020, talks about his work here and overseas in treating visual problems and preventing blindness. Well worth listening to the whole interview. About half way through he explains he can no longer perform eye surgery due to focal dystonia.

 

 

3/12/19 

New on-line store for PharmEngage called bettercaremarket

https://www.bettercaremarket.com.au/associations/dystonia-network-australia-dna.html

Dear All, as mentioned previously below we have partnered with PharmEngage who are assisting not-for- profit organisations. DNA is pleased to announce that PharmEngage has its on-line store bettercaremarket up and running. This partnership provides a great opportunity for all members of DNA and their family members to access medical and lifestyle-related products that are sometimes hard to find.
 
The good news is that all members will receive a 5% discount on any product purchased through bettercaremarket. On top of that, with your purchase, 1% of your order value will be donated to DNA by bettercaremarket.
 
You can navigate to the dystonia-related products via the bettercaremarket tab on the bottom of the DNA home page.
In order to access your 5% discount, you must create a bettercaremarket account and indicate that you are aligned with DNA. Next, you will see your discount showing up in the cart. It’s that easy!
 
If there are specific products you would like access to that aren’t in the catalogue, bettercaremarket would love to hear from you.  Just call them on 1300 172 151 or leave them a message on the website and they will source the product for you.
Please consider supporting bettercaremarket as any sale that goes through them benefits you the member, as well as the Association.
Kind Regards,
Kerrie, Laraine &
Bettercaremarket.

12/19
Parkinson’s SA has offered to take over the administration of this email group. If you would like to be included on their mailing list, please email Simone at Parkinson’s SA:
Subject heading: SA Dystonia Group Member
Message: I give permission for Parkinson’s SA to add my name and email address to their database.
(Please insert your name here)

With the handover, this email address, sadystonia@gmail.com, will no longer be our main contact point but will remain open and email received will be responded to. Thanks for joining the list and hope to see you at meet-ups organised through Mandy (who many of you will have met at our meet-ups) and Parkinson’s SA.

Jacqueline
SA Dystonia Group


 

18/11/19

Results of the Physical Activity in Dystonia Research Survey.

Dear all,

Thank you for your interest in hearing about the results of our recent online survey regarding physical activity behavior of people with dystonia. Please find attached a brief summary of the main findings.

The study has been published in a freely available online academic journal. You can access the full paper here.                                Thank you for assistance with this study, we are sincerely grateful and look forward to pursing research into physical activity and exercise for people with dystonia further.

Warm regards,                                                                                                                                                                                                                                 Dr Alana McCambridge, Dr Rebecca Meiring, and A/Prof Lynley Bradnam

 


 

18/11/19

Cervical Dystonia Research Survey is now live.

Dear members and sufferers of  people with Cervical Dystonia who continue to exercise  would you please consider completing this survey link below which has been sent to us by Associate Professor Lynley Bradnam  University of Auckland, New Zealand. Follow this link below to the Survey: 

Letter from Dr Lynley Bradnam

https://auckland.au1.qualtrics.com/jfe/form/SV_2aeVmCOIOmfJTMh

With permission of  Professor Lynley Bradnam  University of Auckland, New Zealand.

 


Australian Dystonia Awareness Week  7th – 14th September 2019 Incl.

Dystonia Network of Australia Inc. (DNA)  is pleased to announce Australia’s Dystonia Awareness Week on the Government Calendar for 2019 is 7th – 14th September inclusive. We are indebted to Grainger films who decided to professionally  produce the dystonia awareness radio ad pro-bono which is now out at radio stations across Australia via Livermore Media. Please let us know if you hear it. We have our awareness days as follows: Royal North Shore Hospital Sydney: Monday 2nd September 2019 in the Main Foyer from 10am – 5pm.  St Vincent’s Hospital Sydney: Wednesday 11th September 2019 on the Mezzanine level from 10am – 5pm. We have chosen these dates to cover the Movement disorder or Botulinum Toxin clinics. If you live nearby come and chat to us or spend some time assisting at the booths. For more information please email us. The GP Education dates, we will have a booth, at Sydney – Saturday 24th August 2019 and Adelaide – 14th September 2019.  Also let us know if you want to do something special to celebrate Dystonia Awareness Week. We are happy to support you. Stay tuned to our  press release  and  news stories  pages on our web site for updates. For more information you can email us mailto:info@dystonia.org.au

 

DNA Radio Ad on Dystonia 0.30 sec.  

 

      

 

                                Australian Dystonia Awareness Week 7th – 14th September

                                                                                                      Denise & Kerrie at Royal North Shore  Hospital                          Juliette, Robyn & Kerrie at  St Vincent’s

 

 

 

 

                                  Stewart & Margot at the GP Education Day Adelaide 14th Sept. 2019

 

 

9/9/19

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


 

 

Partnership with Pharmengage

Dear All,

We have been approached by a company called Pharmengage who are starting out and hope to assist not-for- profit organisations in different ways. One suggestion that could assist people with dystonia and disabilities is that they source products for you that are difficult to find. For example for people with a tremor they have sourced a spoon that will retain its own balance even while the hand or arm is tremoring. They have asked us to contact our members and people with dystonia to see if you have any ideas on products or gadgets that you think would be useful for the different types of dystonia but haven’t been able to find them. So please put your thinking caps on and get back to us. If you are a member of DNA and state this you will receive a discount and a small percentage of sales will come to DNA.

Warm Regards,                                                                                                                                                                                                  Kerrie and Laraine


29/06/19              

               Dear All 

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) May 2019, which has been formed to support the Australian Not-For-Profit Health Charities sector.6  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.

DNA is a Registered Charity ABN:  66 348 949 649, Charitable Fundraising No: CNF/23669 with deductible gift recipient (DGR) status 2014, with a Medical and multidisciplinary Advisory Board. 

CENTRE FOR COMMUNITY – DRIVEN RESEARCH DATA

5/08/19

Information Session for Deep Brain Stimulation in Perth Western Australia

Dr Rodrigues and the team at Hollywood hospital in Perth, Western Australia are offering an information session for DBS relating to dystonia and other treatable conditions.

For Saturday 21/09/2019 Time: 10-12

DBS Information Flyer

www.drjulianrodrigues.com.au

www.perthneurosurgery.com.au

With permission of  Doctor J. Rodrigues and the DBS team in WA.
This information has been given to DNA in good faith for distribution Please do not Replace, alter or advertise any other information without permission.

17/07/19
Dear All,
you may recall our request for members to be interviewed by the media department of Deakin University to add a human voice to their media release regarding Daniel Corp’s journal article on dystonia being accepted by the prestigious journal “Brain”. Below is the link for the media release and an article in the Adelaide Advertiser featuring Margot Chiverton, one of our members and a patient advocate on the Advisory Board. Many thanks Margot for agreeing to be interviewed and for her articulate and informative comments on dystonia.
Doctor Daniel Corp is also a DNA member. We congratulate him on this research and wish him well on his next research project on dystonia.
With permission of  Doctor Daniel Corp,  Elise Snashall – Woodhams from  Deakin University and Margot Chiverton.

 


28 / 06 / 19

 Lynley Bradnam
Professor of Physiotherapy 
tandfonline.com
(2019). Visual compensation in cervical dystonia. Journal of Clinical and Experimental Neuropsychology. Ahead of Print.

With permission of  Lynley Bradnam 


21/06/19

Attention: All Patients of A/Prof John Carmody He Has A New Private Practice In Wollongong

A/Prof  John Carmody                                                                                                                                                                                                                           Plexus  Neurology 

2/28 Mercury Street, Wollongong NSW 2500  
Phone: 02 4201 0531
Fax: 02 4210 7392
With Permission of  A/Prof John  Carmody

                                                                                                                                                                                                                                                                 

 


May 15th

Australian Dystonia support groups throughout Australia

DEAR ALL: THERE IS A NEW DYSTONIA SUPPORT GROUP IN THE WOLLONGONG & SURROUNDING DISTRICTS NSW. Founded May 2019 

 Dystonia Network of Australia Would like to thank all those who attended the morning tea on Tuesday 14th May in Wollongong it was really fantastic meeting everyone. It was so successful that it was decided to continue having a support get together every 2 months the next meeting will be in July date to be advised.

Please Note: You do not have to be a member of DNA to attend this group. The support group is open to all people that need support with dystonia, as well as their carers and family.  We hope that this is the start of many new friendships and ongoing support and get togethers!

If interested in more details please contact Kerrie on Ph: 02 4784 3368,  Mob: 0414 648 571 or Email  info@dystonia.org.au  We are looking forward to seeing  everyone!!

 

 


 

    7th May

Information Session for Deep Brain Stimulation in Perth Western Australia

Dr Rodrigues and the team at Hollywood hospital in Perth, Western Australia are offering an information session for DBS relating to dystonia and other treatable conditions.

For Saturday June 15th 2019

DBS Information Flyer            

www.drjulianrodrigues.com.au

www.perthneurosurgery.com.au

 

With permission of  A/Professor  J. Rodrigues and the DBS team.

 


            

 April is Voice Awareness Month.

Spasmodic Dysphonia  Or Laryngeal Dystonia    Dystonia Network of Australia Inc.

 

 

 


 

 

7th March

 

youtube.com

The short film is available on youtube at: https://www.youtube.com/watch?v=dCapqLSkb60, Subtitled version: https://www.youtube.com/watch?v=QYMBSwxiXrM. Trailer: https://www.youtube.com/watch?v=EVl3k7BoeIs.

We recommend that everyone looks at the short film Dystonia which is now available below with subtitles

With permission of CWC FILMS

 

Jan. 2019

Physical Activity in Dystonia Research Survey.

Dear members and sufferers of Dystonia would you please consider completing this survey link below which has been sent to us by Dr Alana McCambridge, PhD Lecturer UTS Sydney and Associate Professor Lynley Bradnam  University of Auckland, New Zealand. Follow this link below to the Survey: 

 

Physical Activity in Dystonia Survey

 

Or copy and paste the URL below into your internet browser:

https://utshealth.qualtrics.com/jfe/form/SV_1Fi4QoJzAl8KjiJ

 

With permission of                                                                                                                                                                                                                                                                                                                          Dr Alana McCambridge, PhD Lecturer UTS Sydney and Associate Professor Lynley Bradnam  University of Auckland, New Zealand.

 

 


 

 

St Vincent’s Sydney Dr Stephen Tisch and Dr Ben Jonker have performed it first Treatment for essential Tremor

Dr Stephen Tisch & Dr Ben Jonker Non Invasive Treatment for Tremors in 2018

 

With Permission of St Vincent’s Hospital Sydney & Dr Stephen Tisch.
This information has been given to DNA in good faith for distribution Please do not Replace, alter or advertise any other information without permission.

 

 


 

 

Sydney Dystonia Awareness Seminar

December 2018

This year’s seminar was held in collaboration with the Department of Neurology, at the Education Centre, Westmead Hospital. Despite a very slow registration we had a very successful day with excellent speakers program below the speakers agreed to be videotaped and is now able to be viewed on our web site. The Adelaide seminar is also available for viewing.  Please contact us for more information. mailto:info@dystonia.org.au 

 

 

Dystonia Network of Australia Inc. 4th Dystonia Awareness Seminar, Sydney

 14 September 2018

 Sydney  seminar invitation and registration September 2018

                                                                                                                                                                                                                                                                                                                                                       

                                                                                        
2018 Dystonia Seminar Dinner                                                    DNA would like to thank David Tsui, Westmead Department of Neurology all our wonderful            –                                                                                                               speakers and Medtronic for a very successful 2018 Dystonia Seminar.

 

 

Adelaide Dystonia Awareness Seminar

December 2018

The Adelaide and Sydney seminars are now available for viewing on our web site. Program below.  Please contact us for more information. mailto:info@dystonia.org.au 

 

 

Dystonia Network of Australia Inc. 1st Dystonia Awareness Seminar, Adelaide

Draft Program 21 September 2018

 

Program – Adelaide Seminar 21 Sep 2018 – Dystonia Network of Australia

                                                                                                           

Seminar Registration

Please Note: Program is subject to change.

 

 

Dr. Florence Chang:   Research Project:

 20/08/18         Participants with writer’s cramp or cervical dystonia needed for research into what is the cause of primary dystonia at Westmead hospital.

With permission of Dr Florence Chang                                                                                                          

 


Peter and Margot are pleased to announce the premiere of the short film ‘Dystonia’

DNA would like to Congratulate Peter and Margot and wish them all the very best for the premiere of the short film ‘Dystonia’

Dystonia – The  Short  Film   Written and directed by Peter Chiverton

Starring Lydia Fay, Nathan Bolton and Charlotte Jakubowski

Date and Time: Tuesday 5 June 2018,7pm 

Venue: Mercury Cinema, 13 Morphett Street, Adelaide

         ‘Dystonia’

Image

 Here is the link to the 40 second trailer for the film.  https://www.youtube.com/watch?v=95hfnDzcA3s

 

With permission of CWC Films

 


  

 

Jean-Pierre Bleton's book. A physiotherapy handbook

Merz Pharmaceuticals has once again donated 100 translated copies of Jean-Pierre Bleton’s book for physiotherapists – Spasmodic Torticollis – A physiotherapy handbook –

If you would like a copy for your physio please contact DNA on info@dystonia.org.au with your request and postal address. There is no cost for the book but there is a P&P fee of $9.00. You can pay this fee into Dystonia Network of Australia Inc’s bank account: BSB 633 000 Account number 163 138 233. Many thanks to Debbie Marques and  Merz Pharmaceuticals for providing the books.

 

With permission of Debbie Marques and Merz Pharmaceuticals

 

 

DNA Dystonia Awareness Seminar 2017

Kindly sponsored By Medtronic 

                                                            
Dear Members and the Dystonia community, we had a very successful Dystonia Awareness Seminar on 29 September 2017. It was wonderful to meet everyone and put names to faces especially at the pre-seminar dinner. We had registrants from Adelaide, Melbourne, country NSW, ACT, Queensland and New Zealand. The venue suited us really well and the food was delicious. Our thanks to all the speakers in particular our keynote speaker Professor George Mellick who came down from Brisbane on the day. Most of the other speakers were also generous with their time and stayed throughout the day. The presentations were excellent and we were able to get permission to video-tape all the sessions so now we just have to edit them and hand them to our web designer to put on the web site. We will let everyone know when they are available. There will be a fee for those who were unable to attend the seminar. Our thanks also to Medtronic who were our sponsors on the day.

                                                                  Pre Seminar Dinner

 

 

                                        

                                           

 

 


              

  Dystonia Network of Australia Inc.    Proudly Presents our 2017 Dystonia Awareness Seminar

Kindly Sponsored By

Dystonia Awareness Seminar Invitation 29th September 2017

       Invitation                                                                                                                                         Information  Sheet

                                                                            

                                                                                                      Dystonia Awareness Seminar Information Sept. 2017

 

                                                                                                                                            

                                 ______________________________________________

 

 

4/5/17

DEAR ALL:   THERE IS A NEW DYSTONIA SUPPORT GROUP IN THE ACT & SURROUNDING DISTRICTS.

Dystonia Network Of Australia Inc. and Fiona who is a member of DNA and lives in Cook,  ACT  thought it would be a wonderful and a very beneficial thing for all to start up a face to face support group for Canberra and the surrounding districts. You do not have to be a member of DNA to attend this group. The support group is open to all people that need support with dystonia, as well as their carers and family.  We hope that this is the start of many new friendships and ongoing get togethers!

                                                                                                                                                                                                                                    If interested in more details please contact Kerrie on Ph: 02 4784 3368,  Mob: 0414 648 571 or Email  info@dystonia.org.au  We are looking forward to seeing everyone!!                                                                                         WarmRegards,                                                                                                                                                                                                  Kerrie, Laraine and Fiona DNA Member.

 

 

 

                12/04/17
Dear Members,
– Since there were no objections to administrators taking part in the member forum in the web site, Kerrie, Laraine and 2 members of the committee will take part in and monitor the forum hopefully to make it more active and to encourage members to use it. We ask our members to go in and make themselves familiar with it. Any queries that cannot be answered in the forum can be put to the advisory board with permission from the person asking the question even although they will retain anonymity. Of course the queries can only be answered in a general sense.  https://www.dystonia.org.au/membership/

____________________________

 

 

 

 

 26/2/17

Fly For The Kids:

Associate Professor Andrew Kornberg from The Royal Children’s Hospital in Melbourne is on a fundraising mission to help support a Complex Movement Disorder Clinic at RCH for illnesses like Cerebral palsy, Dystonia, and Neurodegenerative diseases the clinic will consist of a multi-disciplinary team of neurologists, orthopaedic surgeons, rehabilitation specialists and other medical and allied health professionals working together to provide a comprehensive and world class program for these children, with therapies such as Deep Brain Stimulation and intensive therapies that decrease pain. A/Professor Kornberg has planned a 27day fundraising journey circumnavigate Australia – flying solo, starting on Sunday 5th March 2017 at the end of the Australian International Airshow, at Avalon Airport in Victoria.
If you would like more information or donate please go to:
http://flyforthekids.org.au/what-is-fly-for-the-kids/

 

_____________________________

 

Neuroscience Consumer Survey for anybody Living in the Northern Suburbs of Sydney:

This Survey has now closed 16/2/17

Dystonia Network of Australia has been asked to provide a link to a short consumer survey from the Northern Sydney Local Health District Neurosciences Network. This is a network of health service clinicians who focuses on strategically reviewing health services related to neurological and neurosurgical conditions provided by the Northern Sydney Local Health District.

Their aim is to ensure that the right services are provided in the right place, at the right time and that optimal and efficient patient-focused care is delivered.

They have created a short consumer survey to allow patients, carers and family to give feedback regarding the services on offer to them from the Health District. This is with the aim of using the feedback they receive, to improve service delivery and ensure that strategic service planning takes into consideration the consumers point of view.

Feedback is required by 6th February 2017.

Link to Neuroscience Network Consumer Survey: https://www.surveymonkey.com/r/ZN3KTL5

A PDF version is also attached

NSLHD Neuroscience Consumer Survey 2017

On Behalf of the Northern Sydney Local Health District Neurosciences Network.

 

_______________________________________

 

The Disability Trust:

  “ Your Voice, Your Choice“ aims to provide the questions, and hopefully most of the answers, that will keep you informed and able to use your voice to achieve your choice.  If  there is a topic, article, event, or anything for people with disabilities, their families and carers, and people working in the sector, that we should know about, then contact us at info@disabilitytrust.org.au                            Editor: Sean O’Neill.

Exert From The Disability Trust Newsletter October 2016.

The Disability Trust Contact Details: 100-102   Jardine St. Fairy Meadow NSW Australia 2519.        Ph: (02) 4295 9806  /  Fax: (02) 4255 8088    Website: www.disabilitytrust.org.au  or  info@disabilitytrust.org.au   Newsletter Editor: sean@disabilitytrust.org.au

A Big Thank You to The Disability Trust for giving Dystonia Network of Australia Inc. the opportunity to advertise our Dystonia Awareness Notice in the October 2016 issue of:       Your Voice Your Choice Newsletter.

The Disability Trust

Download the Newsletter PDF

With permission of The Disability Trust

________________________________________

PATHWAY         Pathway Summer 2016 

THE NEWSLETTER OF THE PENRITH ASSOCIATION FOR PEOPLE WITH DISABILITIES, THEIR CARERS, FAMILIES AND FRIENDS

A Big Thank You to PATH Inc. for giving Dystonia Network of Australia Inc. the opportunity to advertise our Dystonia Awareness Notice in the November 2016 issue of  the Pathway Newsletter.

With permission of Path Inc.

                               

                                

__________________________________________

 

http://www.myhealthrecord.gov.au    

For information on all areas of Australia.

Health Consumers NSW (HCNSW):
The Wrap: Feb 2019: “Consumers need feedback” a word with…Karen Filocamo; Goodbye Lucille (Lucille left the HCNSW Board to focus on her work with dementia); Allison Kokany Scholarship winner: Ian Hoffmann; Matinee: Screening of The Bleeding Edge documentary (free community screen Thu 14 March 10am-1pm Sydney Mechanics’ School of Arts, Sydney); News and current affairs.

Health consumer news and views.         Newsletter from Health Consumers NSW

Consumers Health Forum of Australia:  –   https://chf.org.au/  

State Peak Health Consumer Organisations:

ACT: Health Care Consumers’ Association of the ACT (HCCA)http://www.hcca.org.au

QLD: Health Consumers Queensland (HCQ)http://hcq.org.au/

NSW: Health Consumers NSW (HCNSW)http://www.hcnsw.org.au/

SA: Health Consumers Alliance of SA (HCASA)http://www.hcasa.asn.au/

VIC: Health Issues Centre (HIC)http://www.healthissuescentre.org.au/

WA: Health Consumers’ Councilhttp://www.hconc.org.au/

                                    
Kerrie Jackson Health Consumer Representative,                                                                                                                                                                      Wentworth Healthcare Ltd. (ABN 88 155 904 975) Provider of the Nepean Blue Mountains PHN

 

                                                                    _____________________________

September 2016                            

If you would like to take part in this Study please ask your Movement Disorder Specialist to refer you to Dr Kumar.                

Dr Kumar’s interview with the Dubbo Weekender Sept. 2015
The interview talks about the Paul Ainsworth Family Foundation, donation to fund research at the Garvan Institute of Medical Research, for two of the most common types of dystonia which affect the (neck) Cervical Dystonia and the (vocal cords) Spasmodic Dysphonia.

      Dr Kishore Kumar Dubbo Weekender 2015 1

           With approval of Dubbo Weekender

 

                                                               ______________________________

 

Dystonia Research Study for Cervical Dystonia

18 th October 2016.

 

Dear Members and Patients with Cervical Dystonia.

Professor Lynley Bradnam and Dr Alana McCambridge,
Are asking for patient participants for their brain stimulation study for cervical dystonia at the University of  Technology in Sydney.They would like another 8 people so they can complete the study.

Please see the attached invitation letter and participant information sheet with contact details if you would like to take part in the study.

 On Behalf of:

Professor Lynley Bradnam,  Professor of Physiotherapy at UTS. and

Dr Alana McCambridge,  Postdoctoral research fellow, Physiotherapy at UTS.

 Warm Regards,

Kerrie & Laraine.

Letter of Invitation

Information Sheet & Contact Details

 

______________________________

 The Nepean Disability Expo

16th & 17th September 2016

Hi All,
After a very informative Seminar Last Friday (report & photo’s to follow)  Dystonia Network Of Australia Inc. (DNA)  Invites you to attend an Event at Penrith Panthers at the foot of the Blue Mountains on Friday Sept.16th & Saturday Sept.17th where our Dystonia Banner will be flying high once again as we will be one of the Exhibitors at The Nepean Disability Expo. We would love to meet you for a coffee and chat.  This is certainly a fantastic opportunity for us to gain Dystonia awareness throughout all kinds of disability and health organisations. 

                                                      ______________________________

Dystonia Network of Australia Inc. Proudly Presents Our 2016

Dystonia Awareness Seminar

Friday 2nd September at Westmead Hospital

We had a very successful Dystonia Awareness Seminar at Westmead Hospital last Friday with 60+ people including members, family and health professionals braving the awful wet weather to enjoy wonderful, professional presentations and abundant, delicious food.  Many of the presenters spent the whole day at the seminar and spoke with attendees at break times. Our thanks to everyone involved, especially Medtronic our sponsor for the seminar. Evaluations of the day (around 50% return) were excellent and returned an average of 4.7/5 for the day overall. We will be writing a full report for the web site. We have asked for a summary or the slides used,  from our presenters and we will get those out to you as soon as they come in

 

______________________________

 

Dr Lucia Zacchi, who is a Molecular Biologist and is heavily involved in Dystonia Research at University of Qld, The goals of her research are to identify therapeutic targets for Dystonia and to understand how the disease develops. In one of her projects, and in collaboration with Dr George Mellick from Griffith University, they are comparing the proteins in the blood of Dystonia patients and healthy individuals. She is looking forward to sharing with you some of the results of these studies! We may also hear of ways that we can become involved in some of her research work and of future research projects.http://researchers.uq.edu.au/researcher/12165 

With permission of Dr George Mellick and Dr Lucia Zacchi

________________________________

 

Dystonia Network of Australia Inc. Invites You To Our

Dystonia Awareness Seminar

on Friday 2nd September at Westmead Hospital

 

Reminder to all NSW country and interstate Dystonia Network of Australia Inc. members needing some financial assistance to help attend the seminar you can apply to DNA by contacting us on                                          Ph:(02)4784 3368 or Email: info@dystonia.org.

 

 

Dear Members & supporters of Dystonia Network of Australia,

above are the invitation, audiovisual consent form and seminar information form. We hope to see as many as possible there on the day. We will follow up with the completed programme with sponsorship information in the next few weeks. As we have discussed, country and interstate members can apply for assistance from DNA. Please contact us if you are interested.

 

Dystonia Awareness Seminar Invitation 2nd Sept. 2016

Dystonia Awareness Seminar Information 2nd September 2016

Dystonia Awareness Seminar Information 2nd September 2016

Warm Regards,
Kerrie, Laraine & the DNA Committee.
Kerrie Jackson – President
Laraine McAnally – Public Officer

 

                                                                 

                                                              _______________________________

 

 

21 January 2016 – Please note that this survey has been closed. 7 December 2015 Professor Lynley Bradnam from UTS Sydney, Physiotherapist Melani Boyce and doctors from Westmead Hospital are carrying out a research project on Dystonia. Please see below for the information on the research project and link to the survey which is for all people with dystonia. We urge you to considering taking part. The survey will run until February 1, 2016 An exploration of the relationship between confidence in balance and fear of falling to functional independence in people with dystonia My name is Dr Lynley Bradnam and I am an academic at the University of Technology Sydney (UTS). I am conducting this research with my investigators Dr Li Khim Kwah from UTS, Ms Melani Boyce from the Department of Physiotherapy at Westmead Hospital, Sydney and the Department of Neurology at Westmead Hospital. The purpose of this research is to understand from people living with dystonia whether dystonia impacts on daily function and influences confidence in performing physical activities. Research like this will help us to better understand the effect of dystonia on function in daily life. If you have been diagnosed with dystonia by a neurologist you are eligible to participate. I will ask you to complete a short survey and 3 validated questionaries that will altogether take no more than 15 minutes to complete. The survey is completely anonymous and you cannot be identified from your answers. You can change your mind at any time and stop completing the survey without consequences. If you agree to be part of the research and to research data gathered from this survey to be published in a form that does not identify you, please continue with answering the survey questions. If you have concerns about the research that you think I can help you with, please feel free to contact me on Lynley.bradnam@uts.edu.au This research project has ethical approval from the UTS Human Resarch Ethics Committee. If you would like to talk to someone who is not connected with the research, you may contact the Research Ethics Officer on 02 9514 9772 or Research.ethics@uts.edu.au and quote this number: ETH15-0096 This is the link to the survey: https://utshealth.au1.qualtrics.com/jfe/form/SV_et936kYk4eOOiX3

With permission of Professor Lynley Bradnam from UTS Sydney and Physiotherapist Melani Boyce from Westmead Hospital.

_________________________________

    26 August 2015 Press release update  This PDF document was uploaded today on the Department of Health web site with a few minor changes in wording from the previous document of 19 September 2015. The issues as below are unchanged faqs-botulinum-toxin-1-sept-2015 23 August 2015 Press release update with more details regarding changes for consumers and neurologists where botulinum toxin under PBS conditions is injected in the neurologists’ private rooms. The revision will still affect patients in that they will be paying a co-payment fee of $37.70 or $6.10 (concession) unless the public hospital pharmacy waives the fee. However, this document states patients will not be required to attend the public hospital pharmacy to hand in the script, as previously suggested. We have attached the PDF document for you to view. Some of the details have still not been worked out and it may be that different areas will have different arrangements, in particular how the botulinum toxin will be transported to the neurologists’ rooms. We urge you to read the document below and contact DNA if you have any concerns and we will act on your behalf.

 

                                                  ______________________________

Press Release 22 August 2015 –

Inaugural Dystonia Seminar at the Garvan 14th August 2015.

DNA Inc. Banner

DNA Inc. Banner

Guest Speakers: Dr B. Jonker DNA President Kerrie Jackson and Public Officer Laraine McAnally,Dr S. Tisch, Physio. M. Boyce, Keynote Speaker Prof. M. de Koning-Tijessen, (Netherlands), Physio. Prof. L. Bradnam, Dr. F. Chang, A/Prof. V. Fung, Manager S.Path. Helen Brake.

Guest Speakers:
Dr B. Jonker, DNA President Kerrie Jackson and Public Officer Laraine McAnally, Dr S. Tisch,  M. Boyce Physiotherapist,  Keynote Speaker Professor M. de Koning-Tijssen (Netherlands),  Professor  L. Bradnam Physiotherapist,  Dr. F. Chang,  A/Professor  V. Fung, and H. Brake Manager Speech Pathology.

Friday 14 August 2015. We had an excellent day with 96 registrants and an amazing range of guest speakers in the auditorium at the Garvan Institute, Sydney, including our Keynote Speaker Professor Marina de Koning-Tijssen from the Netherlands. Patients, carers, nurses, medical staff and allied health professionals combined to make a very appreciative audience and were introduced to a wide range of interesting, professional presentations on different aspects of dystonia, from eminent Australian experts in the field of movement disorders. Our thanks to Peter Jackson for the wonderful photos and the Genetic Alliance for their assistance in making this, our first seminar, so successful.

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Some attendees of the Dystonia seminar

Some attendee's of the Dystonia seminar.

Some attendees of the Dystonia seminar.

 

Some attendee's of the Dystonia seminar.

Other attendees of the Dystonia seminar.

Some attendee's of the Dystonia seminar.

Some other attendees of the Dystonia seminar.

 

Dystonia Network of Australia Inc. Seminar 14/8/15. Jump for Dystonia

Dystonia Network of Australia Inc. Seminar 14/8/15.
“Jump for Dystonia”

 

 ____________________________

 

 

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.

 

www.dystonia.org.au goes live on Thursday 28 May 2015.

For Membership & Information on Dystonia

 

Partners & Sponsors