Due to the COVID19 Restrictions there have been numerous online webinars and information from around the world! A thanks to all the networks for sharing such valuable webinars for the Dystonia community.
International Clinical Trials Day – Raising awareness of the importance of clinical trials and research Acknowledging the contributions from patients and the medical profession who work together to help find treatments, and possibly a cure for Dystonia and other conditions. Click link to read more→ International Clinical Trials Day
World Voice Day 2020 | Focus On Your Voice – Highlighting the impact of voice changes Dysphonia can be caused by many medical and neurological conditions such as Laryngeal Dystonia. Raise awareness, support research into the early diagnosis and management of voice disorders. Click link to read more → World Voice Day
Dystonia and Sleep: Is there a connection, and how well do we understand it?
Movement Disorder Specialist, Dr. Martino (University of Calgary’s Cumming School of Medicine) explains the relationship between Dystonia and our quality of sleep. This is the first webinar in the Living Well Webinar Series. Click link or play to view the video!
What is the research study about? The purpose of this global online survey is to better understand the pain experienced by people with dystonia. The questions in the survey should take approximately 15-20 mins to complete and all the information will be treated confidentially. The information about you (e.g., dystonia type, level of pain) is collected anonymously so that it is not identifiable.
Who is conducting this research?
Dr Alana McCambridge, an academic at the University of Technology Sydney (UTS) in Sydney, Australia will be conducting the research. The student researchers on this project are Master of Physiotherapy students Amanda Amberg, Drew Johnstone, Luis Koeppenkastrop, Monique Crispin and Samuel Liney.
To participate in the study, you need to:
have had a confirmed diagnosis of isolated dystonia by a health professional (e.g., general practitioner, neurologist)
have experienced pain as a result of dystonia in the past 7 days
able to read/type in English
able to give informed consent
Important note! If you have combined or co-occurring dystonia such as Parkinsonism or myoclonus, or if you have dystonia but you only experience pain due to other reasons (e.g., recent muscle injury) not related to your dystonia, you are excluded from this study as it could affect the study results.
If you have questions contact Dr Alana McCambridge via email firstname.lastname@example.org
The Survey will be running online for 6 weeks but may be extended if numbers are low. For more information and to complete the Survey please click link provided!
This film stars 4 Sydney based Voice Health Professionals who take you through some of the issues of dysphonia diagnosis and management in easy to digest language.Supported by 5 brave people who know the daily challenges of a voice disorder, this film helps to shed light on some of the trickier aspects of dysphonia but leaves us feeling hopeful.
Look out for the second feature film ‘Breaking the Silence on Chronic Voice Disorders’ coming soon!
Have you missed the DMRF webinar in regards to 40+ Years of Research Achievements?
Watch a presentation on dystonia research with Joel S. Perlmutter, MD, Professor of Neurology and Head of the Movement Disorders Program at Washington University in St. Louis, and DMRF Scientific Director.
You can now view the webinar by clicking link or play!
Due to the COVID19 Restrictions there has been many online webinars from around the world! A thanks to all the networks for sharing such great webinars for the Dystonia community! Click links to view the NSDA Symposium Webinars!
Jean-Pierre Bleton, a Physiotherapist/Rehabilitation Specialist from the A. De Rothschild in Paris, gives advice on cervical dystonia rehabilitation in times of difficulty in having access to usual therapy. Specialist answers participants’ questions with support of Neurologist Consultant, Dr Marie-Hélène.
This webinar is to help empower Dystonia patients through learning and implementing of new techniques with a physiotherapy focus. Presentations by:
Richmond Stace, a Chartered Physiotherapist, Specialist in Pain Physio & Pain Coach The coaching he delivers focuses on the person, their strengths and the potential to improve their life in specific ways using practical tools, including sensory motor training techniques with a range of exercises and strategies.
Sally Glover, a Clinical Specialist Physiotherapist She has a particular interest in the multidisciplinary rehabilitation in Neurological conditions, including Dystonia. She talks about individually tailored exercises or physical activity, the combination of Botulinum toxin treatment and physiotherapy, practical tips at home and more!
This two-part webinar, led by Speech Language Pathologist/Voice Therapist, Christie DeLuca, walks you through specific voice techniques to help cope with and manage spasmodic dysphonia or voice symptoms. It covers voice therapy techniques to decrease strain, tension, throat discomfort and severity of breaks when speaking, to increase speech fluency, and to increase ease and clarity of speech. It includes helpful “tricks” and tools for speaking on the phone, speaking in virtual meetings, and projecting your voice without effort. Source: National Spasmodic Dysphonia Association.
In this Webinar, Deborah Raymond, MS CGC, Genetic Counselor fromMount Sinai Beth Israeldiscusses #Dystonia Genetics & Genetic Counseling which includes genetic variations and inheritance risk, the role of a #Genetic Counselor, types of genetic testing and factors to consider in testing.
Please keep in mind that access to Dystonia genetic testing and the type of genetic tests available in Australia may be different than other countries.