Upcoming events for June/July
National Pain Week – 24-30 July 2017
National Pain Week is convened by Chronic Pain Australia, dedicated to reducing the social and other barriers to living with chronic pain. Dystonia can cause a range of symptoms including pain. For more information relating to managing pain or coping with with pain visit the Chronic Pain Australia website.
Upcoming Events for May 2017
International Clinical Trials Day – 20 May 2017
International Clinical Trials Day is to celebrate and recognise the importance of the work done in clinical trials. These trials help understand and get better diagnoses for diseases and conditions. Today, we here at Australian Dystonia Support Group (ADSG), acknowledge the contributions from the patients and the medical profession who work together to help find treatments, and possibly a cure, to ensure a better future for all.
Join in and acknowledge or thank the generous contribution volunteers make in relation to Dystonia or brain disorders. Visit our Community Facebook Page to share post!
The Asia-Pacific Centre for Neuromodulation (APCN) part of the Queensland Brain Institute at the University of Queensland is hosting a free Patient/Carer Information session on Saturday 29 April 2017. All patients and carers living with Parkinson’s Disease, Dystonia, Essential Tremor and Tourette’s Syndrome are welcome.
Date: Saturday 29 April 2017 at 10am – 2pm
Venue: South Tweed Sports Club, 4 Minjungbal Drive, Tweed Heads South, NSW 2486
So we have an idea of numbers please RSVP by clicking on the following link and completing the online registration form.
If you would like to get in touch before the meeting you can contact Sara Gottliebsen at firstname.lastname@example.org or call 07 3346 6353 on Monday, Tuesday or Friday.
Support the Fly for the kids! A Mission for a Children’s Complex Movement Disorders Program.
Neurologist, Associate Professor Andrew Kornberg at the Royal Children’s Hospital in Melbourne, is on a mission to fundraise for a Complex Movement Disorders Program to support children with Movement Conditions, including Dystonia. It will consist of a variety of health professionals or a multidisciplinary team to provide care, and innovative and intensive therapies, such as Deep Brain Stimulation. This program is important as it will include a dedicated team of practitioners who understand, support and treat movement disorders. Be involved, raise awareness or donate to cause!
Related links: Have you heard about the ‘Fly for the Kids’ mission?
BAW is the global campaign to increase public awareness of the progress and benefits of brain research. Visit our ‘donate’ page for a list of causes or research projects.
Dystonia Awareness Events – Past
Free Dystonia Presentation – Live online by a Neurologist!
The Brain Foundation will be running a free online Dystonia presentation on Tuesday, 7 June 2016 at 7pm – 8pm.
Neurologist Florence Chang from Westmead Hospital will discuss Dystonia and answer your questions such as:
– What is dystonia?
– What do researchers know about dystonia?
– When do symptoms occur?
– What treatments are available?
– How effective is Botox?
– What research is being done?
There will also be a live Q&A session at the end of presentation. As the places are limited it is best to register asap. When you register you will receive an email with instructions on ‘How to Join the webinar’. Please not the time zone.
Link to register for the online session: Dystonia live online presentation registration
Dystonia Market Stall
On Sunday 8 November 2015, Margot Chiverton an ADSG member who also runs the SA Dystonia Group organised a Dystonia Awareness stall at a local Market. Awareness materials were displayed to raise more awareness of Dystonia and funds raised donated to research into understanding the cause and finding a cure for Dystonia.
Dystonia Awareness Information stall
Any community member welcomed to visit the Pharmacy where there will be someone there to greet you and provide more information about Dystonia. There will be ribbons available to purchase and any funds raised will be donated to the Brain Foundation towards Dystonia Research.
When: Stall was only organised for awareness month in September
Where: Greenwith Pharmacy, Highland Shopping Centre 222 Target Hill Rd (Cnr Golden Grove Rd), Greenwith SA 5125
Adelaide Dystonia Conference May 2015
The Parkinson’s Australia National Conference was held in Adelaide at the Convention Centre 27-29 May 2015. The Dystonia Program ran on Friday 29 may 2015 and was very successful. Some ADSG members attended and for those who were unable to attend they had the opportunity to view the session online.
We would like to thank the Dystonia organising committee and to the ADSG members who volunteered their time to assist.
For an update on the Dystonia session please click on link provided to direct you to Blog post.