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09/07/20                                            Research Project

Dear All,

Here is an invitation from Lynley Bradnam, Professor in Neurorehabilitation and a member of our advisory board, regarding a new research study.
Lynley writes:
” I have attached an invitation to participate in a new study that we are conducting out of Auckland. Its international and open to all types of dystonia. We are interested in the impacts of COVID-19 pandemic restrictions and lockdowns on access to medical care, including BTX injections, medications and allied health therapy.”
We encourage members to take part in this worthwhile global study.

Survey Introduction email invitation

With permission of Associate Professor Lynley Bradnam,

 

 

17/06/20                                   Dystonia Related Pain Survey 

                                                                                                                                                                                                                                    Dear All,

We urge you to consider participating in this online Dystonia Survey by Dr Alana McCambridge:
INFORMATION SHEET AND CONSENT FORM FOR ONLINE SURVEYS:
Attached is a small advert that we are using for the study, and the survey link is here: https://protect-au.mimecast.com/s/eVzCCNLJ8nf9k3nlIm_a0w?domain=utsau.au1.qualtrics.com

Participants can also access the link via my twitter profile:
https://twitter.com/AlanaMcC_PhD/status/1272675107438129152?s=20

The final part of the survey is tricky to read as it tries to look into using the ‘new classification system’ for dystonia so if you are aware of people struggling to answer that section at the end they have the option of answering “I don’t know” as well.

Dr Alana McCambridge, PhD
Lecturer, Research RAO Physiotherapy

Graduate School of Health, Physiotherapy
University of Technology Sydney
T. +61 (02) 9514 7222
Building 20, level 6
PO Box 123 Broadway NSW 2007 Australia
uts.edu.au
With permission of Dr Alana McCambridge, PhD Lecturer UTS Sydney

 

 

18/04/20

Dear All, one of our members, sent DNA this link for an online cervical dystonia trial for global distribution.

 

12/03/20

Dear All, and dystonia sufferers please click the link below for updates on ongoing research in dystonia in Canada.

 

18/11/19

Cervical Dystonia Research Survey.

Dear members and sufferers of Cervical Dystonia who continue to exercise  would you please consider completing this survey link below which has been sent to us by Associate Professor Lynley Bradnam  University of Auckland, New Zealand. Follow this link below to the Survey: 

Letter from Dr Lynley Bradnam

https://auckland.au1.qualtrics.com/jfe/form/SV_2aeVmCOIOmfJTMh

With permission of  Professor Lynley Bradnam  University of Auckland, New Zealand.

 

 

17/07/19
Dear All,
you may recall our request for members to be interviewed by the media department of Deakin University to add a human voice to their media release regarding Daniel Corp’s journal article on dystonia being accepted by the prestigious journal “Brain”. Below is the link for the media release and an article in the Adelaide Advertiser featuring Margot Chiverton, one of our members and a patient advocate on the Advisory Board. Many thanks Margot for agreeing to be interviewed and for her articulate and informative comments on dystonia.
Doctor Daniel Corp is also a DNA member. We congratulate him on this research and wish him well on his next research project on dystonia.

 

 

https://www.deakin.edu.au/about-deakin/media-releases/articles/brain-mapping-study-could-pave-way-to-treat-neurological-disorder

 

With permission of  Doctor Daniel Corp,  Elise Snashall – Woodhams from  Deakin University and Margot Chiverton.

 

 


 

 

28 /06 /19

 

Dr Lynley Bradnam
Professor of Physiotherapy  
tandfonline.com
(2019). Visual compensation in cervical dystonia. Journal of Clinical and Experimental Neuropsychology. Ahead of Print.
With permission of  Professor Lynley Bradnam  University of Auckland, New Zealand.

 


18/11/19

Results of the Physical Activity in Dystonia Research Survey.

Dear all,

Thank you for your interest in hearing about the results of our recent online survey regarding physical activity behavior of people with dystonia. Please find attached a brief summary of the main findings.

The study has been published in a freely available online academic journal. You can access the full paper here.                                Thank you for assistance with this study, we are sincerely grateful and look forward to pursing research into physical activity and exercise for people with dystonia further.

Warm regards,                                                                                                                                                                                                                                 Dr Alana McCambridge, Dr Rebecca Meiring, and A/Prof Lynley Bradnam

 

 

Jan. 2019

Physical Activity in Dystonia Research Survey.

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: 

 

Physical Activity in Dystonia Survey

 

Or copy and paste the URL below into your internet browser:

https://utshealth.qualtrics.com/jfe/form/SV_1Fi4QoJzAl8KjiJ

 

With permission of                                                                                                                                                                                                                                                                                                                          Dr Alana McCambridge, PhD Lecturer UTS Sydney and Associate Professor Lynley Bradnam  University of Auckland, New Zealand.

 

 


 

20/08/18

Dr. Florence Chang

Dear All, here is a research project from Doctor Florence Chang being carried out at Westmead Hospital. 

“Participants with writer’s cramp or cervical dystonia needed for research into what is the cause of primary dystonia at Westmead hospital
Age 18 or above with writer’s cramp or cervical dystonia
1 hour surface electromyography to see how muscle activate during posture compared to movement
1 hour transcranial magnetic stimulation to check brain excitability during posture compared to movement tasks
1 hour functional brain MRI to look at brain activity during postural compared to movement task”
My contact details are below and email is: Florence.chang@health.nsw.gov.au
Regards,
Florence Chang
Staff Specialist in Neurology
Neurology Department,
Level 1, Block AB,
Westmead Hospital
Corner Darcy Road and Hawkesbury Road
NSW 2145 AUSTRALIA
Phone: +61 2 8890 8908
Fax: +61 2 9635 6684

 

With permission of  Dr Florence Chang.

 

2018                                                                                                                                                                                                   Attention all with CD (cervical dystonia)

Melani Boyce, physiotherapist,  Is calling for more people with CD (cervical dystonia) to be involved in a study at Westmead hospital. She is  investigating the balance and function of people with CD and starting to look into falls in these people. Please click below on the two links for further information on the study.

PICF_Functional screening tests in CD_ver_2_Apr_24_2017 (1) Functional screening tests study flyer_version_1_September_12_2016 (1)

PICF_Functional screening tests in CD_ver_2_Apr_24_2017 (1)

Please Note

Melani is now able to see patients with dystonia at Westmead Hospital. Please contact Melani at:

Physiotherapy department
Westmead Hospital
PO Box 533
Wentworthville, NSW, 2145
Ph: 8890 6500   Fax: 8890 7102
Email: melani.boyce@health.nsw.gov.au

If you live outside the Western Sydney Local Health District area please forward a referral from your Neurologist to the Physiotherapy department and you will be contacted to arrange an appointment time.

With permission of Melani Boyce

 

14/4/17

Dr Lynley Bradnam
Professor of Physiotherapy      

University of Technology Sydney 

Dr Lynley Bradnam  who is a Professor of Physiotherapy at the University of Technology Sydney has kindly giving us this link to her newly published article on gait and balance in people with Cervical dystonia. 

http://doi.org/10.1016/j.gaitpost.2017.04.004

 With permission of Dr Lynley Bradnam

September ’16                                                                                                                                                                                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,   Sept2015                                                                                                                                                                                        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 .

Dr Kishore Kumar Dubbo Weekender 2015 1

With approval of the 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.

 Warm Regards,

Kerrie & Laraine.

Letter of Invitation

Information Sheet & Contact Details