Events

Australian Dystonia Suppoirt Group Events

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Events For February

Rare Disease Day: 28 February 2018 

The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases. Link: https://www.rarediseaseday.org/

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Parkinson’s & Movement Disorders Information Session for Patients & Carers – 10 March

Parkinson's & Movement Disorders Information Session for Patients & Carers

The Asia-Pacific Centre for Neuromodulation (APCN) part of the Queensland Brain Institute at the University of Queensland is hosting a Patient/Carer Deep Brain Stimulation Information session.

All patients and carers living with Parkinson’s Disease, Dystonia, Essential Tremor and Tourette’s Syndrome are welcome. Please find attached a flyer with all the details about the event.

When: Saturday 10 March 2018 at 9am – 1pm 

Where: Toowoomba Sports Ground, 47 Arthur Street, Toowoomba, QLD 4350

As a light lunch will be provided for catering purposes please RSVP by completing the registration form at the following link and clicking on the registration button.

Link: www.qbi.uq.edu.au/movementdisordersevent


Brain Awareness Week: 12-18 March 2018

Brain Awareness Week (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 why research important 2017

 

 

 

 

 

 

 

 

 

 

 


Good Friday Appeal – Royal Children’s Hospital 30 March 2018

Support the Complex Movement Disorders Program

Launched on 4 July, the CMDP features a multidisciplinary team of neurologists, neurosurgeons, developmental medicine specialists, rehabilitation specialists, orthopaedic surgeons, and allied health professionals like physiotherapists, occupational therapists and neuropsychologists working together to provide comprehensive and world-leading care.  It 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, such as Dystonia. Be involved or donate to cause!

Link: https://www.rchfoundation.org.au/2017/07/cutting-edge-care-for-complex-movement-disorders/

Related links: Have you heard about the ‘Fly for the Kids’ mission?

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Events For April 

World Voice Day: 16 April 2018

World Voice Day 2018

World Voice Day is celebrated across the globe on 16th April. It’s a time to pause and reflect on the important role that voice plays in every aspect of our lives. 

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International Clinical Trials Day – 20 May 2018

International Clinical Trials Day Dystonia

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.

Make a difference! Visit our ‘Dystonia research page to participate in a #Dystonia Clinical trial! 

More info: Consumer Guide to Clinical Trials 

#WhyClinicalTrialsMatter #clinicaltrialsday

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National Pain Week – 24-30 July 2018

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 pain visit the Chronic Pain Australia website.

Related links: 

http://www.nationalpainweek.org.au/

Dystonia and Pain 

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Speech Pathology Week 19- 25 August 2018 – Communication access is communication for all!

Speech Pathology Week seeks to promote the speech pathology profession and the work done by speech pathologists with the more than 1.1 million Australians who have a communication or swallowing disorder that impacts on their daily life.

Communication is a basic human right and Speech Pathology Week seeks to promote this fact.

The theme for 2018 draws on aspirations from the Speech Pathology 2030 project. The theme reinforces the important role that speech pathologists play in the lives of Australians with speech and swallowing difficulties.

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Dystonia Awareness Month: 1 – 30 September 2018 

Keep an eye out for updates! Link to more information ➡ Dystonia Awareness Month

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National Carers Week: 15 – 21 October 2018

National Carers Week is a great opportunity to raise awareness about the diversity of carers and caring roles in your local community. There are a variety of events and activities being run in every state and territory throughout National Carers Week and you can find one near you clicking this link ➡ Find an Event.

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Dystonia Awareness Events – Past 

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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.  

Dystonia_Logo_CMYK1Neurologist 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 registrationblue line

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.

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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.

http://brainfoundation.org.au/disorders/dystonia

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

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Adelaide Dystonia Conference May 2015

Professor Lynley Bradnam Dystonia session Presentation Can non-invasive brain stimulation improve dystonia

Professor Lynley Bradnam Dystonia session Presentation Can non-invasive brain stimulation improve dystonia

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.

Dystonia session presentations and Jump for Dystonia images

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