Dystonia Network of Australia (DNA) as we know it today, had its beginnings as a local Blue Mountains & Greater Sydney Support Group (BM&GSSG). This group was initially founded & co-ordinated by Kerrie Jackson, which met bi-monthly from 2005 in Leura, NSW; to support those living with movement disorders.
The conceptual idea of DNA, as an organisation, took shape when Kerrie, Robyn McIlvar and Laraine McAnally, (a retired clinical nurse consultant in Movement Disorder) attended the 2013 Parkinson’s Disease & Movement Disorder World Congress held in Sydney. Here, through the generous aid of Associate Professor Lynley Bradnam, Kerrie and the ladies of the BM&GSSG group were able to assist with the Dystonia booth. They passed on pamphlet information that they, alongside the Australia Dystonia Support Group (ADSG) had provided. During the congress there were many approaches from medical, allied health, nurses, carers and people with dystonia all seeking further support. The Blue Mountains group, subsequently became very aware of the need for a national organisation
Financial support from the disbanded Australian Spasmodic Torticollis Association, run by Laraine McAnally, generously assisted with the initial establishment of DNA; a transfer of their funds agreed on by the previous members.
In communication with the New Zealand Dystonia Patient Network, DNA was given sound advice on proceeding with the new organisation. Kerrie and Laraine, with the backing of the local support group (BM&GSSG) commenced set up for incorporation, which included a formation of a business plan. The writing of information brochures on dystonia was commenced.
Laraine was instrumental in gaining acceptance of the new organisation’s official name – Dystonia Network of Australia Inc; which was accepted by the Department of Fair Trading in December 2013 and its incorporation granted on the 6th of January 2014. She also applied for charitable status as a Health Promotion Charity, which was granted on September 2014, alongside Donor Gift Recipient status with the ATO.
Office bearers and a committee were elected:
President – Kerrie Jackson; Vice President – Anne Cooper;
Public Officer and Interim Secretary – Laraine McAnally; Treasurer – Robyn Mcilvar. Committee members – Sylvia May, Karyn Morgan, Peter Webb and Marina McShannon.
Work on the website and logo began. In March 2014 the aims and objectives were formulated into a strategic plan, with an ABN being obtained from the ATO.
A multidisciplinary advisory board was recruited and established consisting of neurologists, paediatric neurologists, neurosurgeon, geneticist, specialist nurses, physiotherapists, neuroscientists, neuropsychologist, general practitioner, pharmacist, speech pathologist, retired lawyer and community representatives.
Laraine commenced writing dystonia information brochures in November 2014 for review and approval by the advisory board. DNA established a constitution and website building commenced in 2015.
DNA has been operational since 27th May 2015.
2025 – DNA’s 10th anniversary!
As of May 2025 DNA has been in operation for 10 years and we have plans for special activities during Dystonia Awareness Month in September. On the 14th June 2025 current committee members reconnected with Marina and Gail who were involved in the establishment of DNA ten years ago. We enjoyed a wonderful lunch in Sydney where warm conversation flowed freely and memories of DNA’s early days were fondly recalled.
Updated 28 June 2026
