The History of Dystonia Network of Australia Incorporated (DNA)

 

The Blue Mountains Dystonia Group: Left: Laraine, Rita, Robyn, Kerrie, Sylvia, Mira, at the front Kerrie’s mother Betty.

The Blue Mountains Dystonia Support Group (NSW): Left: Laraine, Rita, Robyn, Kerrie, Sylvia, Mira, front, Kerrie’s mother Betty

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 was meeting 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. Kerrie was notified that Associate Professor Lynley Bradnam was organising a Dystonia booth at the Congress. Kerrie 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. The booth was made possible by the efforts of Associate Professor Lynley Bradnam who we sincerely thank for all 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, 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.

 

President - Kerrie Jackson 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.    

Brochure folding brigade at the Congress 2013.

              Brochure folding brigade at the World Congress 2013

Kerrie and Anne with Lynley Bradnam

   Kerrie and Anne with Lynley Bradnam

 

Monika, Kerrie and Laraine

Dystonia Europe Executive Director Monika Benson, with Kerrie Jackson DNA President and Laraine McAnally DNA Public Officer

 

DNA Inc. Founding Members 2014. Anne, Karyn, Kerrie, Sylvia, Laraine, Rita, Robyn & absent were Gail, Marina & Peter.

DNA Inc. Founding Members 2014:  Anne, Vice President, Karyn,  Committee Member, Kerrie, President, Sylvia, Committee Member, Laraine, Public Officer & Interim Secretary, Rita, DNA Member, Robyn, Treasurer & absent were DNA Member Gail and Committee Members Marina and Peter                                                                                                         

 

DNA Banner July 2015 Kerrie & Laraine Co - Founders DNA Inc.

     DNA Banner July 2015                                                      Kerrie & Laraine  Co – Founders DNA Inc.                  DNA has been operational since 27th May 2015

 

  Subsequent Progress

  • The newly formed DNA obtained advice from a retired charity lawyer
  • Our 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 and Marina McShannon
  • Web design /logo/ data base commenced
  • March 2014 – 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 information brochures in November 2014 for review and approval by the Advisory Board
  • Amended DNA Constitution 24 April 2015
  • April 2015 – website building commenced
  • DNA has been operational since 27th May 2015
  • Fundraisers organised for 2015
  • Trivia night held 25 July 2015
  • City to Surf fundraiser held August 2015
  • Auction & benefit Night held October 2015
  • Phil Mangan joined the DNA committee as Secretary – December 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.