ADVISORY BOARD APPROVED BROCHURES PROVIDED & WRITTEN BY DNA Inc.

Australian Dystonia Awareness Week 20th – 27th September 2019 Inclusive

Dystonia Network of Australia Inc. (DNA) is pleased to announce our Dystonia Awareness Week on the Government Calendar for 2019 is 20th – 27th 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:

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

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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 the internet and meetings 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 AND SURROUNDING AREA

New Wollongong Dystonia Support Group for those wishing to be part of this group please contact Kerrie Phone: 0414 648 571 or Email: info@dystonia.org.au for more details. Please Note: You do not need to be a member of DNA to be part of this group it is opened to all who need support for dystonia and would like to have a coffee and a chat in the Wollongong and surrounding areas. Contact details will remain in Professor Carmody’s Botox clinic. We are hoping the Support Group will start early next year.

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. 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 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!! Warm Regards, Kerrie, Laraine and Fiona DNA Member.

NSW:

DNA general meeting

The next DNA general meeting will be held on Saturday 6 April at 1 pm at Laraine’s home, 32 Moray Street, Winmalee. Please send notice of attendance or apologies to this email address or contact Laraine by text on 0414 494 485. You will receive an agenda in the next week – please contact me if you wish to table an item for the agenda. We look forward to seeing you there. Please note: The meeting will be followed by the Blue Mountains support group meeting at 2-4pm.

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: 6th April at 2 pm

at Laraine’s house: 32 Moray St, Winmalee

RSVP: Text/Ring 0414494485 or email info@dystonia.org.au

NSW New Wollongong Dystonia Support Group

For those wishing to be part of this group please contact Kerrie Phone: 0414 648 571 or Email: info@dystonia.org.au for more details. Please Note: You do not need to be a member of DNA to be part of this group it is opened to all who need support for dystonia and would like to have a coffee and a chat in the Wollongong and surrounding areas. Contact details will remain in Professor Carmody’s Botox clinic. We are hoping the Support Group will start early next year.

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

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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)