ADVISORY BOARD APPROVED BROCHURES PROVIDED & WRITTEN BY DNA Inc.
Australian Dystonia Awareness Week 20th – 27th September 2019 Inclusive.
Dystonia Network of Australia Inc. (DNA) is pleased to announce our Dystonia Awareness Week on the Government Calendar for 2019 is 20th – 27th September inclusive. During this week we hope to hold Dystonia Information Days in at least 2 Tertiary Hospitals in Sydney and host a phone-in forum with a movement disorder specialist. We have also been given the opportunity to boost community awareness by advertising DNA and explaining Dystonia in community media in the lead up to Awareness Week. We will keep you informed of any other activities. Hopefully some members will also consider holding events in other areas and states to mark this week. We are aware that other groups follow the American dystonia awareness which is the whole of September and we are happy to support any events for members during this extended time. Stay tuned to our press release and news stories pages on our web site for updates. For more information about Dystonia go to dystonia.org.au or email us on email@example.com
Sept. ’18 Dystonia Awareness Day at Westmead Hospital
DNA general meeting
The next DNA general meeting will be held on Saturday 6 April at 1 pm at Laraine’s home, 32 Moray Street, Winmalee. Please send notice of attendance or apologies to this email address or contact Laraine by text on 0414 494 485. You will receive an agenda in the next week – please contact me if you wish to table an item for the agenda. We look forward to seeing you there. Please note: The meeting will be followed by the Blue Mountains support group meeting at 2-4pm.
We recommend that everyone looks at the short film Dystonia which is now available below with subtitles
Physical Activity in Dystonia Research Survey is now live.
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:
Or copy and paste the URL below into your internet browser:
With permission of Dr Alana McCambridge, PhD Lecturer UTS Sydney and Associate Professor Lynley Bradnam University of Auckland, New Zealand.
DEAR ALL: THERE IS A NEW DYSTONIA SUPPORT GROUP IN THE WOLLONGONG AND SURROUNDING AREA
New Wollongong Dystonia Support Group for those wishing to be part of this group please contact Kerrie Phone: 0414 648 571 or Email: firstname.lastname@example.org for more details. Please Note: You do not need to be a member of DNA to be part of this group it is opened to all who need support for dystonia and would like to have a coffee and a chat in the Wollongong and surrounding areas. Contact details will remain in Professor Carmody’s Botox clinic. We are hoping the Support Group will start early next year.
With Permission of St Vincent’s Hospital Sydney & Dr Sephen Tisch.
Sydney Dystonia Awareness Seminar
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:email@example.com
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
The Adelaide and Sydney seminars are now available for viewing on our web site. Program below. Please contact us for more information. mailto:firstname.lastname@example.org
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
Please Note: Program is subject to change.
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
Here is the link to the 40 second trailer for the film. https://www.youtube.com/watch?v=95hfnDzcA3s
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 email@example.com 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 062 601 Account number 1039 3686. 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
Invitation Information Sheet
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 firstname.lastname@example.org We are looking forward to seeing everyone!! WarmRegards, Kerrie, Laraine and Fiona DNA Member.
– 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/
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:
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
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 email@example.com 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 firstname.lastname@example.org Newsletter Editor: email@example.com
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.
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.
For information on all areas of Australia.
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’ Council – http://www.hconc.org.au/
Kerrie Jackson Health Consumer Representative, Wentworth Healthcare Ltd. (ABN 88 155 904 975) Provider of the Nepean Blue Mountains PHN
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.
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.
Kerrie & Laraine.
The Nepean Disability Expo
16th & 17th September 2016
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: firstname.lastname@example.org.
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.
4 th April 2016.
New Botulinum Toxin Neurology Clinic Now Opened at Wollongong Public Hospital
Treatment will Be Administered By: A/Prof John Carmody FRCPI FRACP PhD.
The following information was sent to DNA by Professor Carmody. “A/Prof. John Carmody recently established a new Botulinum Toxin Neurology Clinic at Wollongong Public Hospital www.islhd.health.nsw.gov.au/Services/Botulinum_Toxin_Clinic/default.asp Over the last 25-30 years, patients with dystonia from the Illawarra and Shoalhaven regions have had to travel to Sydney to receive Botulinum Toxin therapy. But now, people from these areas who experience any of the following conditions are very welcome to contact us:
- Forms of dystonia
- Cervical dystonia
- Focal limb dystonia
- Oromandibular dystonia
- Dystonic tremor
- Axial dystonia
- Other conditions which are treated include
- Jaw clenching/bruxism
- Hemifacial spasm
- Excessive saliva (e.g. in Parkinson’s disease)
- Chronic migraine
- Excessive sweating (e.g. underarms)
- Focal spasticity (e.g. after stroke, spinal cord injury)
This service is provided weekly at the Neurology Clinic, Level 4, Block C, Wollongong Public Hospital. Treatment is administered by A/Prof John Carmody FRCPI FRACP PhD. Interested health care professionals or patients are encouraged to contact us. Contact details – Tel: 02 4253 4430, Fax: 02 4253 4436″
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.email@example.com 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.firstname.lastname@example.org 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.
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.