ADVISORY BOARD APPROVED BROCHURES                                                                                            PROVIDED & WRITTEN BY DNA Inc.

           Australian Dystonia Awareness Week  7th – 14th September 2019 Inclusive

Dystonia Network of Australia Inc. (DNA)  is pleased to announce Australia’s Dystonia Awareness Week on the Government Calendar for 2019 is 7th – 14th September inclusive. We are indebted to Grainger films who decided to professionally  produce the dystonia awareness radio ad pro-bono which is now out at radio stations across Australia via Livermore Media. Please let us know if you hear it. We have our awareness days as follows: Royal North Shore Hospital Sydney: Monday 2nd September 2019 in the Main Foyer from 10am – 5pm.  St Vincent’s Hospital Sydney: Wednesday 11th September 2019 on the Mezzanine level from 10am – 5pm. We have chosen these dates to cover the Movement disorder or Botulinum Toxin clinics. If you live nearby come and chat to us or spend some time assisting at the booths. For more information please email us. The GP Education dates, we will have a booth, at Sydney – Saturday 24th August 2019 and Adelaide – 14th September 2019.  Also let us know if you want to do something special to celebrate Dystonia Awareness Week. We are happy to support you. Stay tuned to our  press release  and  news stories  pages on our web site for updates. For more information you can email us mailto:info@dystonia.org.au

DNA Dystonia 0.30 sec.  Radio Ad

       

Dystonia Network of Australia Inc. (DNA Inc.)                                                                

Providing a pathway to support, information, literature and community awareness for adults and children living with dystonia and their carers and health providers.

Our aim:

  • To provide appropriate, researched information for adults and children with dystonia, their carers and interested health providers.

  • To increase community awareness of the condition.

  • To ultimately fund seminars and assist with research into dystonia.

 

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 

Home Phone: (08 ) 9582 1676   Mob Phone: 0408 485 751 

Email: secretary@beb.org.au

Email: chairman@beb.org.au

Email: memberliaison@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 IN THE WOLLONGONG & SURROUNDING DISTRICTS 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 IN THE ACT & SURROUNDING DISTRICTS. 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:  October DTBA  2019 at 2pm – 4pm

at Laraine’s house: 32 Moray St, Winmalee NSW

RSVP: o414 648 571  or email info@dystonia.org.au

NSW 

 

 

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/

 

Newcastle & Hunter District Dystonia Support Group

Contact Details: Elly Bath     

Mob Phone: 0411 252 110   

Email: ellybath@gmail.com 

 

THERE IS A NEW DYSTONIA SUPPORT GROUP IN THE WOLLONGONG & SURROUNDING DISTRICTS 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.

 

 

 

                                                  _________________________________________________

 

 

FACEBOOK  SUPPORT:

Australian Dysphonia Network Inc.(ADN)

Contact Details:  Australian Dysphonia Network

Email: australiandysphonianetwork@gmail.com 

Website: www.australiandysphonianetwork.org  

 

Australian Dystonia Support Group

Contact Details: Lee Pagan

Email: ADSG@live.com.au

Website: www.australiandystoniasupportgroup.wordpress.com

                              ____________________________

 

ACT:

 

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

 

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)

Contact Details: Elizabeth Foster                                                                                                                                                                                                                             Royal Victorian Eye and Ear Hospital

Ph: (03) 9587 2326 

Ph: (03) 9929 8536  Fax (03) 9663 7203

Email: efo33132@bigpond.net.au

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

Meets:  3 times a year at the Royal Victorian Eye & Ear Hospital

 

 

SA

 

  

Blepharospasm Support (BEB)

Contact Details:  John Yeudall 

Mob: Phone: 0419 045 698

Email: chairman@beb.org.au

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

 

South Australian Dystonia Group

Contact Details:  Simone Parkinson SA

Email:  simone@parkinsonssa.org.au

12/19
Parkinson’s SA has offered to take over the administration of this email group. If you would like to be included on their mailing list, please email Simone at Parkinson’s SA:
Email address: simone@parkinsonssa.org.au
Subject heading: SA Dystonia Group Member
Message: I give permission for Parkinson’s SA to add my name and email address to their database.
(Please insert your name here)

With the handover, this email address, sadystonia@gmail.com, will no longer be our main contact point but will remain open and email received will be responded to. Thanks for joining the list and hope to see you at meet-ups organised through Mandy (who many of you will have met at our meet-ups) and Parkinson’s SA.

Jacqueline
SA Dystonia Group

                                                                                                                                                                     

WA

 

Blepharospasm Australia (BEB)

Contact Details: John Yeudall 

Mob: Phone: 0419 045 698

Email Chair: chairman@beb.org.au

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

 

BEB Western Australia Support Group Inc.

Contact Details: Lyn Smith

Phone: 9582 1676  Mob: Phone: 0408 485 751

Email: secretary@beb.org.au 

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

Meet:  2 times a year, 

 

NT

 

NT Blepharospasm Support (BEB)

Contact Details: Carrol

Email: gandcalynch@gmail.com

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

 

 

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

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.

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.