The History of Dystonia Network of Australia Incorporated (DNA)
Dystonia – Our Tortured Bodies.
Dystonia might be a life sentence,
with its muscle pain,
continuous spasms inside and out,
contorted bodies and tremors,
but it will never destroy
our minds, our hearts, or our souls.
By Kerrie Jackson.
DNA evolved from the local Blue Mountains & Greater Sydney Support Group (BM&GSSG) which meets bi-monthly in Leura NSW. The idea took shape when Kerrie Jackson, the founder and coordinator of the Blue Mountains group in 2005, planned to attend part of the Parkinson Disease & Movement Disorder World Congress where there would be speakers and representatives from 75 countries in June 2013 as she had in many conferences before, when she received a message saying that Associate Professor Lynley Bradnam was organising a Dystonia booth at the Congress.
She jumped at the chance to be the representative at the Dystonia Booth, as she was always thinking of ways to spread the word about Dystonia and to let people know about the Blue Mountains Dystonia Support Group.
This booth was made possible by the efforts of Associate Professor Lynley Bradnam who we sincerely thank for all her help. We also extend the thanks to Lee Pagan, Hariklia Nguyen and Nadine Schnabel for providing cards and pamphlets on the Australia Dystonia Support Group (ADSG internet group), a support group on Facebook. During the congress there were many approaches from medical, allied health, nursing, carers and people with dystonia to the support group booth for information.
This made the Blue Mountains group very aware of the need for a national organisation and led to the inception of DNA Inc. A previous non-incorporated group, Australian Spasmodic Torticollis Association, had disbanded in 2009 with funds of $8,000 that was to be transferred to a group with a similar interest in dystonia and the past members agreed to transfer of the funds to assist set up of DNA Inc.
In communication with the New Zealand Dystonia Patient Network, in particular David Barton and Dave Mitchell, we were given sound advice on proceeding with the new organisation. Kerrie and Laraine McAnally, a retired clinical nurse consultant in movement disorder, with the backing of the local support group (BM&GSSG) commenced set up for incorporation and a business plan as well as skeleton brochures were written. However, all data was lost in the Winmalee bush fires in October 2013. Work recommenced in November 2013.
Progress over the next 12-18 months.
- The newly formed DNA met with a retired charity lawyer, regarding advice on our progress.
- National organisation name accepted by Department of fair Trading December 2013
- Application for incorporation with Fair Trading December 2013 and DNA was incorporated on 6 January 2014. Election of DNA office bearers: Kerrie Jackson – President / Anne Cooper; Vice President / Laraine McAnally – Public Officer and interim Secretary / Robyn McILvar – Treasurer. Committee members: Sylvia May, Karyn Morgan, Peter Webb & Marina McShannon
- Web design /logo/ data base in early stages.
- March 2014 Brainstorming meeting with retired charity lawyer, where aims & objectives over the next three years were formulated into a strategic plan .
- ASTA fund transfer to DNA March 2014
- ABN awarded from ATO March 2014
- Charitable status as Health Promotion Charity achieved with ACNC September 2014
- DGR (deductible gift recipient) status registered with ATO November 2014 and backdated to September 2014.
- November 2014 – Multidisciplinary Advisory Board recruited and completed with the appointment of Neurologists/Paediatric Neurologists/Neurosurgeon/Geneticist/Specialist Nurses/Physiotherapists/Neuroscientists/Neuropsychologist/General Practitioner/Pharmacist/Speech Pathologist/Retired Lawyer/Community advisors.
- Laraine McAnally commenced writing of brochures in November 2014 for review and approval by the Advisory Board
- Phil Mangan joins the DNA committee as Secretary – December 2015
- Website building commenced and skeleton web site for training given to Kerrie Jackson
- Kerrie mastered the complexities of adding information and photographs to the web site
- April 2015 commenced design of website
- DNA has been operational since 27th May 2015
- Fundraisers organised for 2015
- Trivia night 25 July 2015
- City to Surf fundraiser August 2015
- Auction & benefit Night October 2015
- We have so many people to thank for their support, advice and guidance in helping us reach the membership stage of DNA. We are forever in their debt.
Dystonia Network of Australia Inc. (DNA) is pleased to announce Australia’s Dystonia Awareness Month on the Government Calendar 1st – 30th September 2021 inclusive. Stay tuned to our press release and news stories pages.
Australian Dystonia Awareness Week 2020 The Hills Radio Interview Adelaide
Adelaide Hills Radio as well as some other country radio stations have been running our ad for dystonia awareness week. Chris Carpenter, General Manager of Adelaide Hills Radio, interviewed Kerrie & I last Thursday 3rd September 2020 about Dystonia and DNA. We won’t be giving up our day jobs any time soon but it went pretty well except for a couple of audio glitches.
With Permission of The Hills Radio Adelaide
DNA Dystonia 0.30 sec. Radio Ad
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, Doctor 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) 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. 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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