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 our Dystonia Awareness Week on the Government Calendar for 2019 is 7th – 14th September inclusive. During this week we hope to hold Dystonia Information Days in at least 2 Tertiary Hospitals in Sydney and host a phone-in forum with a movement disorder specialist. We have also been given the opportunity to boost community awareness by advertising DNA and explaining Dystonia in community media in the lead up to Awareness Week. We will keep you informed of any other activities. Hopefully some members will also consider holding events in other areas and states to mark this week. We are aware that other groups follow the American dystonia awareness which is the whole of September and we are happy to support any events for members during this extended time. Stay tuned to our press release and news stories pages on our web site for updates. For more information about Dystonia go to dystonia.org.au or email us on info@dystonia.org.au
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:
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To provide appropriate, researched information for adults and children with dystonia, their carers and interested health providers.
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To increase community awareness of the condition.
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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
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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/
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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
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: Sunday July 14 2019 at 2pm – 4pm
at Laraine’s house: 32 Moray St, Winmalee NSW
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
DEAR ALL: THERE IS A NEW DYSTONIA SUPPORT GROUP IN THE WOLLONGONG & SURROUNDING DISTRICTS NSW. Founded May 2019
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!!
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
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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: Jacqueline Jeremy
Email: sadystonia@gmail.co
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)
Registered Charity ABN: 66 348 949 649 and Charitable Fundraising No: CNF/23669 with deductible gift recipient (DGR) status 2014
