ADVISORY BOARD APPROVED BROCHURES
PROVIDED & WRITTEN BY DNA Inc.
Dear All, because many of the movement disorder specialists will be in Europe in late September at the International Congress of Parkinson’s & Movement Disorders, we have changed the dates of the Dystonia Awareness Week on the government calendar from 20-27 September to 7-14 September 2019
Australian Dystonia Awareness Week 7th – 14th September 2019 Inclusive.
Dystonia Network of Australia Inc. (DNA) is pleased to announce our Dystonia Awareness Week on the Government Calendar for 2019 is 7th – 14th 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
Dystonia Awareness Day Westmead September 2018
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) in May 2019 which has been formed to support the Australian Not-For-Profit Health Charities sector.
We are registered with the Centre for Community – Driven Research (CCDR) & the lnternational Centre for Community – Driven Research. (ICCDR)
Registered Charity ABN: 66 348 949 649 and Charitable Fundraising No: CNF/23669 with deductible gift recipient (DGR) status 2014
28 / 06 / 19
Professor of Physiotherapy
With permission of Lynley Bradnam
Attention: All Patients of A/Prof John Carmody He Has A New Private Practice In Wollongong
A/Prof John Carmody Plexus Neurology
With Permission of A/Prof John Carmody
DEAR ALL: THERE IS A NEW DYSTONIA SUPPORT GROUP IN THE WOLLONGONG & SURROUNDING DISTRICTS NSW. Founded May 2019
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 firstname.lastname@example.org We are looking forward to seeing everyone!!
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.
With permission of A/Professor J. Rodrigues and the DBS team.
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.
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
DNA’s 4th Dystonia Awareness Seminar
in Sydney September 14th 2018
Seminar invitation and registration September 2018
2018 Dystonia Seminar Dinner DNA would like to thank David Tsui, Westmead Department of Neurology all our wonderful – speakers and Medtronic for a very successful 2018 Dystonia Seminar.
Adelaide Dystonia Awareness Seminar
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
21 September 2018
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.
Dystonia Network of Australia Inc. Proudly Presents our 2017 Dystonia Awareness Seminar
Kindly Sponsored By
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:
“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.”
This man plays his guitar during brain surgery for focal dystonia in Bengaluru:
New Zealand Patient Network Inc. Annual Seminar: Auckland 16th June ’18 http://www.dystonia.org.nz
Kerrie & Juliette at the 2017 New Zealand Patient Network Dystonia Seminar dinner in Auckland.
with permission of NZPN
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!
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
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.
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.
St Vincent’s Hospital Articles
20 Years of Voice – View PDF
Given to DNA with permission of Dr Paul Darveniza, Dr Stephen Tisch & Greg Partington.
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.