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, 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 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
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. .

 

 

 

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.

 

 

03/20

For people with a disability needing grocery delivery

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

 

 

3/12/19

New on-linestore called Bettercaremarket

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

Dear All, as mentioned previously below we have partnered with Bettercaremarket who are assisting not-for- profit organisations. DNA is pleased to announce that  bettercaremarket on-line store is 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!
Kind Regards,
Kerrie, Laraine &
Bettercaremarket.

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 Inclusive.

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.  

 

Partnership with Bettercaremarket

Dear All,

We have been approached by Bettercaremarket 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) 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. 

                                                                            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 21/09/19 Time: 10am – 12noon

DBS Information Session 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.

 

 

 

https://www.deakin.edu.au/about-deakin/media-releases/articles/brain-mapping-study-could-pave-way-to-treat-neurological-disorder

 

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
Visual compensation in cervical dystonia
(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 so 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 15/06/19 Time: 10am – 12noon

DBS Information Session Flyer

www.drjulianrodrigues.com.au

www.perthneurosurgery.com.au

 

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

 

 

                                                                                              

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.

 

 

 

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 

DNA’s 4th Dystonia Awareness Seminar  

  in Sydney September 14th 2018

Seminar invitation and registration September 2018

              Dystonia Network of Australia Sydney Seminar Program 

 

                                   
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

 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.

     

                                                                                                                                                                                                                                         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

                                                                         

                                                                                                                                                                                                                                                

 

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 062 601 Account number 1039 3686. Many thanks to Debbie Marques and Merz Pharmaceuticals for providing the books.

 

 

 

 

 

 

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

Kindly Sponsored By

Dystonia Awareness Seminar Invitation 29th September 2017

 Invitation                                                                                                                                           Information

                                                                                        Dystonia Awareness Seminar Information Sept. 2017

 

 

 

04 / 9 /17                                 Dystonia awareness initiative

 

If you live in the Melbourne area you might like to pop along to join Yasmina, one of our members, in a meeting and walk for dystonia in this month of Dystonia Awareness. See an excerpt of Yasmina’s email below:

Move as One Walk for a Cause           www.eventbrite.com.au

“The first event is a meeting and walk on September 10th. For the first event we aren’t raising any money as it is just about raising awareness by connecting with the local community. There’s so little knowledge or information out there about the condition and I feel that by sharing stories and getting a discussion going we can do a lot of good for people with dystonia and people who want to help.

Come join us for coffee and a walk for a cause. This event is kicking off Living with a Jerk, a movement aiming to raise awareness for dystonia. You’ll hear from those involved and get a chance to learn more about the disorder and how you can be part of the movement. Meet at the Cerberus Beach House at 10 a.m. on Sunday, 10th September for coffee and a chat, and then we’ll head to the beach for a walk.”

We wish Yasmina good luck for Sunday and applaud her continuing commitment to raising awareness of dystonia.

 

 

 

 

 

                                                 ________________________________

21/07/17

This man plays his guitar during brain surgery for focal dystonia in Bengaluru:

http://www.news.com.au/technology/science/human-body/man-plays-guitar-during-sevenhour-brain-surgery/news-story/bb29cbea2c901e8836b114e8e7a81fcc 

 

 

                                   ____________________

New Zealand Patient Network Inc. Annual  Seminar: Auckland 16th June ’18                                                                                       http://www.dystonia.org.nz  

April Newsletter 2018 

 

Kerrie & Juliette at the 2017 New Zealand Patient Network Dystonia Seminar dinner in Auckland.

with permission of NZPN
Kerrie and Chris with the New Zealand Dystonia Patient Network Seminar Rotorua 2016 Dinner.

Kerrie and Chris at the New Zealand Dystonia Patient Network Seminar Dinner 2016

 

On behalf of myself, Chris & the DNA Committee we would like to thank The New Zealand Dystonia Patient Network for their kind invitation to be a Guest Speaker at the 2016 seminar at Rotorua. We had a great day filled with interesting speakers it was also a fantastic way to renew Australia’s Dystonia Alliance with New Zealand. The day finished with Chris and I as guests of the NZDPN seminar dinner it was a perfect end to a wonderful day thank you to all!

Kerrie Jackson,

President DNA Inc.

 

Report from the Seminar,

Kerrie Jackson and I attended as guests of NZDPN Inc. The Sudima Hotel in Rotorua was the venue, we were due to arrive in Rotorua on Friday Night. Unfortunately there was heavy fog across areas of New Zealand and after two landing attempts, our pilot decided it was not safe to attempt another landing so back to Auckland it was. Finding alternative arrangements for all passengers took some time so it was a late night for all concerned. Fortunately for us Air New Zealand put several of us on the early morning Rotorua flight which saw Kerrie and me at the Sudima Hotel just after 9 am on the day of the Seminar.

We were very warmly welcomed by NZDPNInc. members.

After preliminaries by the NZDPN Executive Committee members, the first speaker was Doctor Barry Snow. http://www.brainmatters.co.nz/users/dr-barry-snow

Doctor Snow established the Auckland Movement Disorders Clinic in 1995. He spoke ‘off the cuff’, mentioning the history of the ‘Dystonia’ term from the work of Dr Hermann Oppenheim in 1911 –https://en.wikipedia.org/wiki/Hermann_Oppenheim  and Dr David Marsden’s more recent rethink on movement disorders, and the connection in children from a focal dystonia developing into a generalised dystonia. Dr Marsden was instrumental in defining Dystonia as a disease entity rather than as a mental health issue, a conversion disorder https://en.wikipedia.org/wiki/C_David_Marsden 

Dr Snow went into details of genetics, complexities of genes, genes talking to genes and environmental components. The Human Genome Project has revealed that there are over 20,000 genes so there are many discoveries yet to be made. Dystonia is a software not a hardware problem where an area of the brain that should be inhibited is overactive, a sensory breakdown. He touched on various forms of Dystonia and how body part, age of onset, type of movement – pulling, twisting etc and whether or not there are ‘extras’ such as tremor determined the eventual diagnosis a person is given. Pain, social embarrassment, disability and consequential psychology of the condition were also discussed. The various treatments were mentioned.

Of particular interest was that the old analogy of the brain operating as a computer has been changed to comparing the brain to a university in that, if one faculty such as the entire Engineering faculty is taken out, then other related faculties such as Mathematics and / or Architecture would adapt and take over the duties formerly done by the Engineering faculty. An interesting concept when related to DBS and the development of new pathways and how it takes time for these pathways to develop and become useful. Dr Snow was generous with his time in listening to comments and answering  questions from the room.

Cervical Dystonia was the next topic, addressed by Julie Rope, neurophysiotherapist   http://www.ropeneurorehab.co.nz/index.php/therapists . Julie was a dynamic and passionate speaker and packed a lot into her talk. She has provided DNA access to her notes, Julie referred to Dystonia as a sensorimotor integration of the vestibular, visual and muscular systems. The importance of balance and centering the body were mentioned along with various techniques. http://www.dystonia.org.nz/Cervical%20Dystonia%20May%202016.pdf

Like me, Julie is a fan of the Chronicles of a Dystonia Muse. One quote she mentioned was – ‘Minimize fatigue, maximise life’.

We had a lunch break around 12.30.

Next to speak was Alison Fitzpatrick on her personal experience with DBS and how much it has improved her quality of life. Alison developed Dystonia in childhood and is very grateful for all the things that DBS has enabled her to do.

David Barton then gave a report on his attendance at the NSDA conference in Chicago.

The last speaker of the day was our own Kerrie Jackson who gave a Power Point presentation of the DNA, all that has been achieved and future plans. The Executive of the NZDPNInc. conveyed congratulations to the volunteers who relaunched the Australian Dystonia group now known as DNA and are keen for an ongoing alliance between the two networks. It is anticipated that a couple of NZDPNInc. representatives will attend the proposed DNA seminar in Sydney on 2 September.

There was to be a panel discussion but time was against us. Kerrie and I attended as guests at the NZDPN Annual Genaral Meeting. After the AGM some met in the bar for pre-dinner drinks. The dinner was held in the same room as the Seminar which was an excellent idea as it meant it was just Seminar attendees. A number of people went home after the dinner but quite a few stayed overnight which meant we were able to breakfast together on Sunday morning.

It was a wonderful event where we could hear from the experts, share our experiences and meet others with Dystonia. I was particularly excited to finally meet David Barton, in person, and reconnect with Anne Brett. Both were involved with the International Online Dystonia Support Group in the 1990’s when I was the editor of the DMail Newsletter. Larry Craig was another person who was involved in the very early days of online Dystonia support. Communication was a lot more primitive then when we were using the Undernet and mIRC for real time communications.

I found this link to a story on Larry from 1997 still available online  https://www.microsoft.com/misc/features/features_publisher.htm

By Chris Gavenlock, member DNA

 

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 City2Surf 2015 Team DNA

Team Dystonia Ann, Candy, Laraine & Claire at the 2015 City2Surf. It was not only a

Dystonia Awareness Day but also a fundraiser, raising $1220 what a wonderful effort by all.

Congratulations to Laraine and Claire who also beat their last year’s time by over 10 min.

We certainly hope that next year we have many more people involved with this event as this

is a fantastic opportunity for a dystonia fundraiser and awareness day.

The start line!! Ready, set & go

The start line!!  Ready, set & go.

Dystonia & DNA Awareness Day 2014

Dystonia & DNA Awareness & fundraising Day 2015

About 15 min. to the start line!!

About 15 min. to the start line!!

Some Fantastic scenery along the way!

With Kerrie after the walk and still standing – some fantastic scenery as a backdrop! Thanks to all the people who sponsored us we raised a fantastic total of $1,220.00.

 

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 City2Surf 2014 

Dystonia & DNA Awareness Day 2014

Kerrie, Laraine & Claire just before the start the 2014 City2Surf

They don't even looked puffed

They don’t even looked puffed

City2Surf 2014

Kerrie and her daughters Kimberley & Jennifer spent the day handing out brochures about DNA Inc. & Dystonia.

 

City2Surf 2014 Team DNA

 

What a wonderful effort by Laraine and Claire achieving a fantastic time of 2h.54mins.

Plus Karyn her sister & niece with a Fabulous time of 2h. 35 mins.

Congratulation everyone it was a great day for Dystonia Awareness by all of Team Dystonia.

 

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 St Vincent’s Hospital Articles

20 Years of Voice  – View PDF

Botulinum Toxin Therapy at St Vincent’s Hospital.

Given to DNA with permission of Dr Paul Darveniza, Dr Stephen Tisch & Greg Partington.

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Monika, Kerrie and Laraine 2014

Monika, Kerrie and Laraine Adelaide 2014

Dystonia Europe at Dystonia Patient Event in Melbourne, Australia

January 17, 2014 Reprinted with permission from Monika Benson of Dystonia Europe from Dystonia Europe News Winter 2014

At the Dystonia Treatment Congress in Hannover in May last year, Dr Lynley Bradnam, from Discipline of Physiotherapy at Flinder’s University in Adelaide, met Dystonia Europe President Monika Benson. Over a conversation about the importance of physiotherapy for dystonia patients and dystonia patient advocacy work, Monika shared that she would be coming to Melbourne later in the year for her daughter’s graduation. Very soon after Lynley’s return to Adelaide the first connections between Dystonia Europe and Australian dystonia patients were made. Lee Pagan and Hariklia Nguyen took the first steps to try and organize a meeting and very soon there were more volunteers involved. Saturday January 11th about 50 dystonia patients and family members from various places of Australia (Melbourne, Aidelaide, Perth, Blue Mountains, Canberra, Brisbane and Cairns) gathered at the Cerebral Palsy Education Centre in Glen Waverly, a suburb of Melbourne. Sue Kennedy who works for the centre and whose daughter has generalised dystonia, welcomed everybody and introduced the speakers.

Dystonia Europe Executive Director Monika Benson presented the work of Dystonia Europe and the activities of a national dystonia patient organisation giving the Swedish Dystonia Association as an example. Monika concluded with a greeting from Dystonia Europe and its President Robert Scholten with an invitation to the recently established DNA – the Dystonia Network of Australia, to become an associate member of DE.

Dr. Lynley Bradnam, presented her research on dystonia and physiotherapy, using and measuring the effectiveness of TMS (Transcranial Magnetic Stimulation) as a method for treatment of cervical dystonia. Lynley is a strong advocate for specialised physiotherapy for the best treatment results of cervical dystonia and she showed an interest in developing a programme to educate general practitioners and physiotherapists in Australia about dystonia. After a short break for coffees and teas and time to meet and chat, the programme continued with Kerry Jackson from the Blue Mountain Support Group, presenting her story of living with dystonia. She shared her painful struggle during many years before getting correct diagnosis and treatment. Laraine McAnally, a nurse with an interest in dystonia, continued and explained the history and background of the various dystonia support groups/organisations in Australia. Kerry and Laraine have now taken the initiative to form a national dystonia patient organisation and just recently, on January 6th, the Dystonia Network of Australia – DNA, was registered. Jan Hoffmann of the Melbourne support group and Suzanne Bayliss of the Cairns support group, both shared some information about their activities and encouraged the participants to get involved. Lee Pagan who started the Australian national Facebook group encouraged the participants to join.

Thank you to all for coming to the meeting in Glen Waverly and especially thank you to the ”Admin Team”: Sue Kennedy, Lee Pagan, Lisa McInnes, Hariklia Nguyen, Nadine Schnabel for all their hard work and a well organised meeting, which will hopefully encourage and inspire to new and similar events around Australia. We wish the DNA and the various support groups throughout Australia lots of good luck in their work, and we look forward to follow the development. Dystonia Europe is very happy to see how dystonia patients in various countries get together to establish dystonia organisations and if we can be of help in this process we will always try and support in the best way possible.

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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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