The Blue Mountains Dystonia Group: Left: Laraine, Rita, Robyn, Kerrie, Sylvia, Mira. Front: Kerrie’s mother Betty
DNA evolved from the local Blue Mountains & Greater Sydney Support Group (BM&GSSG) which met bi-monthly in Leura, NSW from 2005. The DNA idea took shape when Kerrie Jackson, the founder and coordinator of the Blue Mountains group, attended the 2013 Parkinson’s Disease & Movement Disorder World Congress and worked at the Dystonia booth at the Congress. The booth was made possible by the efforts of Associate Professor Lynley Bradnam and we sincerely thank her for her help. We also extend thanks to Lee Pagan, Hariklia Nguyen and Nadine Schnabel for providing cards and pamphlets on the Australia Dystonia Support Group (ADSG), a support group on Facebook. During the Congress there were many approaches from medical, allied health, nurses, 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. A previous non-incorporated group, Australian Spasmodic Torticollis Association, had disbanded in 2009 with funds of $8,000 and its members transferred the funds to assist with the set up of DNA.
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 disorders, with the backing of the local support group (BM&GSSG) commenced set up for incorporation and a business plan. The writing of information brochures on dystonia was commenced. However, all data was lost in the Winmalee bush fires in October 2013. Work recommenced in November 2013.
The organisation name Dystonia Network of Australia Inc. was accepted by the Department of Fair Trading in December 2013 and DNA was incorporated on the 6th January 2014. 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 commenced and in March 2014 the aims and objectives were formulated into a strategic plan and an ABN was obtained from the ATO. In September 2014 DNA was granted charitable status as a Health Promotion Charity by The Australian Charities and Not-for-profits Commission. Deductible Gift Recipient (DGR) status was registered with the ATO and 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. Phil Mangan joined the DNA committee as secretary in December 2015. A series of fundraisers was held during that year including a trivia night, auction and benefit night and City2Surf fundraiser.
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
Page updated 12 March 2023
