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
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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
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
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Australian Dystonia support groups throughout 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.
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DEAR ALL: THERE IS A NEW DYSTONIA SUPPORT GROUP WOLLONGONG & SURROUNDING DISTRICTS DYSTONIA SUPPORT GROUP 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 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!!
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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:
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
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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
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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
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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)
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.
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