ADVISORY BOARD APPROVED BROCHURES  
PROVIDED & WRITTEN BY DNA Inc.
 

 

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 Dystonia 0.30 sec.  Radio Ad

 

      

 

  Australian Dystonia Awareness Week 7th – 14th September

                                                                                           Denise & Kerrie at Royal North Shore Hospital Sydney:

 

 

 

 

 

 

 

 

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, 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


16/9/19

Genetic Alliance’s  Genetics: Today’s Science For Everyday Families

Wednesday 30th October 2019  Westmead Institute Sydney

 

This is a Free Seminar.

Phone: (02) 9295 8359

or RSVP online at geneticalliance.org.au/genetics.php

RSVP By: 22nd October 


 

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.    

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

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.

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

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.

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


 

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

                                                       

                                                                                                                                                                                                                                                                                                                                                                                                                                                                      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

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.

                                                                                                          

 


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 $8.00. 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.

 

 


 

 

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

________________________________________

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.

                               

                                

__________________________________________

 

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 

 

________________________________

 

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

 

_________________________________

    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.

ufrdtuyb

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”

 

 ____________________________

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

For Membership & Information on Dystonia