ADVISORY BOARD APPROVED BROCHURES                                                                                            PROVIDED & WRITTEN BY DNA Inc.

 

Australian Dystonia Awareness Week  5th – 12th September 2020 Incl.

Dystonia Network of Australia Inc. (DNA)  is pleased to announce   The Australian Dystonia Awareness Week on the Government Calendar for 2020 is 5th – 12th September inclusive. We are indebted to Grainger films who decided to professionally  produce the dystonia awareness radio ad for us pro-bono.  Stay tuned to our press release  and news stories pages on our web site for updates. For more information you can also email us  mailto:info@dystonia.org.au

DNA Radio Ad on Dystonia 0.30 sec.  

9/9/19

ABC Health Report on Dystonia

Dystonia Network of Australia Inc. (DNA) is thrilled to announce as part of the Dystonia Awareness week the segment on the ABC Health Report on Dystonia is now playing. DNA members Robyn and Paul are the patients who are telling their Dystonia stories and our DNA Advisory Board Members Associate Professor Victor Fung MDS Neurologist spoke on Botox and its effective treatment of Dystonia and how it works by altering messages from the brain, Associate Professor Stephen Tisch MDS Neurologist spoke about Movement Disorders and what they are, he also spoke on new MRI called a DTI which can show Dystonia the gapes in gene research, and how patients with the gene can sometimes have no symptoms and others without the gene can have the symptoms and finally how therapies are sometimes ahead of understanding conditions and Dr Lynley Bradnam Professor of Physiotherapy (NZ) spoke about Dystonia and what it is and different types of the condition also DBS surgery and how in the early days it was thought it was a hysterical condition and advances in imagery Here is the ABC link: https://www.abc.net.au/radionational/programs/healthreport/living-with-the-mental-weight-of-dystonia/11491220

With Permission of                                                                                                                                                                                                                          James Bullen
Producer, Health Report,                                                                                                                                                                                                                                                                       ABC Radio National  Sydney, Australia

                                                                      

 

Dystonia Network of Australia Inc. (DNA)

Australia’s Dystonia Head Office ( Founded Dec. 2013) 

Contact Details:  

Kerrie Jackson & Laraine McAnally

Address: 9 Denman Parade Leura 2780 NSW Australia

Ph. / Fax: (02) 4784 3368 or Mob: 0414 648 571

Email: Kerrie & Laraine: info@dystonia.org.au

Website: www.dystonia.org.au

 

 

                                      ________________________________________________              

 

 

Australia’s National Blepharospasm Support Organization

Blepharospasm Australia Inc.

Postal Address: 5 Fenton Place Bouvard

Western Australia  6211

Contact Details: Lyn Smith 

Mob Phone: 0408 485 751 

Email: secretary@beb.org.au

Blepharospasm Australia Website:  https://beb.org.au

BEB Western Australia Support Group Inc. Website:  http://beb.org.au/support/support-in-western-australia

                          

                                         _________________________________________________

 

Dystonia groups providing support through meetings and the internet in Australia 

 

Support groups help people with dystonia by giving comfort and encouragement and a greater understanding of their condition. They also provide a safe environment for sharing their experiences and concerns with other people with dystonia. The purpose of support groups is to assist each other, including friends and family, in discussing day to day issues and tips in managing these issues to enhance quality of life. They are not a substitute for medical or treatment advice given by the individual’s medical specialist but rather fill the gaps in learning how to cope with the condition.

 

_______________________

 

DEAR ALL: THERE IS A NEW DYSTONIA SUPPORT GROUP  WOLLONGONG & SURROUNDING DISTRICTS DYSTONIA SUPPORT GROUP NSW. Founded May 2019 

Dystonia Network of Australia Would like to thank all those who attended the morning tea in Wollongong it was really fantastic meeting everyone. It was so successful that it was decided to continue having a support get together every 2 months.

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  info@dystonia.org.au  We are looking forward to seeing  everyone!!

       

                            

DEAR ALL:   THERE IS A NEW DYSTONIA SUPPORT GROUP  ACT & SURROUNDING DISTRICTS DYSTONIA SUPPORT GROUP.Founded December 2016

Dystonia Network Of Australia Inc. and Fiona who is a member of DNA and lives in Cook,  ACT  thought it would be a wonderful and a very beneficial thing for all to start up a face to face support group for Canberra and the surrounding districts.

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  info@dystonia.org.au  We are looking forward to seeing  everyone!!                                                                                                                                                                                                                                

__________________________________________

            

NSW:

Blue Mountains and Greater Sydney Dystonia Support Group. (BM&GSDSG) Founded in 2005

Contact Details: Kerrie Jackson

Home Phone:/Fax: (02) 4784 3368  or  Mob. Phone: 0414 648 571

Email: info@dystonia.org.au

Web site: www.dystonia.org.au

We Meet Bi-Monthly Date to be Advised:

 

 

 

NSW Blepharospasm Support (BEB)

Contact Details: Stephen Bradley

Mob Phone: 0408 232 338

Email: stevebrad60@gmail.com 

Website:  http://beb.org.au/support/support-in-new-south-wales/

 

 

THERE IS A NEW DYSTONIA SUPPORT GROUP.  WOLLONGONG & SURROUNDING DISTRICTS DYSTONIA SUPPORT GROUP NSW. Founded May 2019               

DEAR ALL:                                                                                                  

Dystonia Network of Australia and Kathy are organising the Wollongong Support Group next meeting date TBA.                                      
Please Note: You do not need to be a member of DNA to be part of this support group, it is open to all who need support for Dystonia their families and carer’s.
We hope that this is the start of many new friendships and ongoing support and awareness for those with Dystonia.

Contact Details: Kerrie Jackson

Home Phone:/Fax: (02) 4784 3368  or  Mob. Phone: 0414 648 571

Email: info@dystonia.org.au

Web site: www.dystonia.org.au

Wollongong Support Group Date to be advised:

 

 

 

 

Newcastle & Hunter District Dystonia Support Group

Contact Details: Elly Bath     

Mob Phone: 0411 252 110   

Email: ellybath@gmail.com 

 

 

___________________________________________

 

ACT:

 

NEW ACT & Surrounding Districts Dystonia Support Group. Founded December 2016

Contact Details:  Kerrie Jackson

Phone: ( 02) 4784 3368  or  Mob Phone:  0414 648 571

Email:  info@dystonia.org.au

 ACT support group Date to be advised:

 

 

 

 

QLD:

 

QLD Blepharospasm Support (BEB)

Contact Details: Grant Rutherford

Email: grantrutherford46@gmail.com

Website: http://beb.org.au/support/support-in-queensland/

 

 

NTH QLD Dystonia Support

Contact Details: Suzanne Bayliss

Ph. No: (07) 4032 4033

Email: s.l.bayliss@bigpond.com

 

VIC:

 

VIC Blepharospasm Support Group (BEB)

Website: http://beb.org.au/support/support-in-victoria

 

SA

 

Blepharospasm Support (BEB)

Website: http://beb.org.au/support/support-in-south-australia

 

 

South Australian Dystonia Group

Contact Details:  Simone Parkinson SA

Email:  simone@parkinsonssa.org.au

                                                                                                                                                                     

WA

 

Blepharospasm Australia (BEB)

Website: http://beb.org.au/website-help/    or   http://beb.org.au

 

BEB Western Australia Support Group Inc.

Contact Details: Lyn Smith

Mob: Phone: 0408 485 751

Email: secretary@beb.org.au 

Website: http://beb.org.au/support/support-in-western-australia

 

 

NT

 

NT Blepharospasm Support (BEB)

Contact Details: Carrol

Email: gandcalynch@gmail.com

Website:  http://beb.org.au/support/support-in-northern-territory

 

_________________________________________

 

FACEBOOK  SUPPORT:

Australian Dystonia Support Group

Contact Details: Lee Pagan

Email: ADSG@live.com.au

Website: www.australiandystoniasupportgroup.wordpress.com

 

Australian Dysphonia Network Inc.(ADN)

Contact Details:  Australian Dysphonia Network

Email: australiandysphonianetwork@gmail.com 

Website: www.australiandysphonianetwork.org  

 

__________________________________________

 

Dystonia Network of Australia Inc. (DNA) is the National Peak Body for All Types of Dystonia. 

 https://www.healthdirect.gov.au/australian-health-services/23030054/dystonia-network-of-australia/services/leura-2780-denman  

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. https://www.cc-dr.org/networks/apon/  &    https://www.cc-dr.org/networks/apon/aponmembers/

We are registered with the  Centre for Community – Driven Research (CCDR)  & the lnternational Centre for Community – Driven Research. (ICCDR)

ICD  Classification lnternational  Statistical  Classification  of  Diseases and  Related Health Problems 
(lCD),  a  medical classification list by the World  Health Organisation (WHO). lt contains codes for  diseases,  signs  and symptoms,  abnormal  findings,  complaints,  social circumstances,  and external  causes  of injury or diseases.
Vl Disease of the nervous system.
G20-G26 Extrapyramidal and movement disorders
G24 Dystonia.

Registered Charity ABN:  66 348 949 649,  Charitable Fundraising No: CNF/23669 with deductible gift recipient  (DGR) status 2014 and a Medical and multidisciplinary Advisory Board.

 

Partners & Sponsors