TNA Australia is an ACNC Registered Charity (36 863 441 816).
TNA Australia was formed to provide support and encouragement to sufferers of Trigeminal Neuralgia and related facial pain.
The founding of Trigeminal Neuralgia Association Australia
by Irene Wood Founder of TNAA
My worst experience of pain was when a size 9 soccer boot met my shin. It was debilitating pain. I was carried off the field and the tears were freely flowing. So, when my mother described her pain, it was “okay so you have this electric shock zapping through” and left it at that. After all, pain was that tender purple and dark green patch on my shin, and like all pain it would eventually go away. I was busy living my own life and left the matters of my mother’s health to her doctors. Until, one day, I saw my mother wince in pain while tears rolled down her cheeks. I watched as she bravely tried to cope. I wondered to myself “how bad does this get?” I had no idea what she was suffering from and neither did she
Her pain worsened and for months her food in semi-fluid were consumed through a straw. To avoid triggering an attack, the straw was carefully placed in the other side of her mouth. Each day she became more reluctant to leave her comfort zone, and sat in anticipation of her pain. Sleep was no longer an escape. She began waking up in the middle of the night screaming with pain. Her frustration in her helpless suffering was expressed by her “One minute I am in dire pain and then next minute I am fine. You must think I am mad or pretending and whining again.” Then when her pain became more dominant her misery was reflected in “ If I could die the pain would stop”
Eventually I learned the name of the disorder and delved into the Internet and began learning about Trigeminal Neuralgia. Although by then my mother had undergone a radio frequency rhizotomy and was pain free, I could not shelve the information I had gained and pretend no one else needed it, for it was obvious that many were suffering helplessly like my mother, in isolation and in ignorance
In June 2000, I registered with the Trigeminal Neuralgia Association in the USA to start a support group here in Sydney and began the slow road of contacting sufferers throughout Australia, in particular Sydney, New South Wales. I was passionate about sharing the information. I felt that with knowledge they would cope better. There was also the need to let others know that they were not alone with this strange pain. There was no need to suffer in silence. In February 2002, we felt the need to reach out nationally and that would be better served by a national organisation. Frank Martin worked tirelessly on the rules and constitutions and registered the association with the various bodies
We were officially registered with Department of Fair Trading New South Wales as an incorporated body effective from 9 January 2003. As support groups were located in various other states it was necessary to register also with ASIC. This took effect on January 21st 2003. A special referendum was held in October 2003 and with more than 75% of the membership votes, appointed Irene Wood as a continuing President
In keeping with the Association’s goal to have a unified understanding and an improved approach to the treatment of Trigeminal Neuralgia and other related facial pain, the association holds a biennial conference. We feel very blessed with the fantastic support we have enjoyed from local and international speakers over the years
|June 2000||Registered with Facial Pain Association USA|
|4 September 2000||Inaugural Sydney support group meeting held at Seven Hills|
|8 December 2001||Inaugural Melbourne support group meeting held at Ringwood Library|
|19 January 2002||Inaugural Brisbane support group meeting held at Kenmore Hills|
|February 2002||A decision was made that we would form a national Trigeminal Neuralgia organisation|
|September 2002||An invitation to the Western Australian group to unite with us was declined, citing distance as the reason and they chose to remain autonomous|
|9 January 2003||Registered with Fair Trading NSW as a national organisation|
|21 January 2003||Registered with ASIC – completes the Founding of Trigeminal Neuralgia Association Australia|
|19 April 2003||Inaugural Newcastle /Hunter support group meeting held at Raymond Terrace|
|22 November 2003||Inaugural Canberra support group meeting held at Weston Creek|
|28 February 2004||Inaugural Sunshine Coast support group meeting held at Coolum Peregian RSL|
|October 2004||Thanks to Warren Ong, tnaustralia.org.au website was launched|
|4 December 2004||Inaugural Sydney CBD support group meeting held at St James Parish Hall|
|19-20 August 2005||1st National Conference at Bondi Beach|
|21 January 2006||Inaugural Coffs Harbour support group meeting held at Sawtell Uniting Church|
|18 February 2006||Inaugural Adelaide support group meeting held at The State Library Adelaide|
|18 March 2006||Inaugural Gold Coast support group meeting held at Palm Beach|
|7–8 September 2007||2nd National Conference at South Molle Island, QLD|
|27-29 August 2009||3rd National Conference in Yarra Valley, VIC|
|6 December 2009||Inaugural Hobart support group meeting held at Bellerive, Tasmania|
|19 June 2010||Inaugural Townsville support group meeting held in Pimlico|
|2–4 September 2011||4th National Conference in Hunter Valley, NSW|
|28 April 2012||Regional conference in Adelaide SA|
|23-25 August 2013||5th National Conference on the Gold Coast, QLD|
|14-16 August 2015||6th National Conference on the Gold Coast, QLD|
|June 2017||Irene Wood stepped down after 17 years of service.|
|24-26 August 2018||7th National Conference Coogee Beach, Sydney.|
|2020||Due to Covid 2020 conference was cancelled.|
|May 2021||The Association received a grant from Cromwell Property GroupnFoundation Trust to create a Digital Outreach and Digital Training Program.|
|November 2021||Launch of new website – created by Amanda Wyatt of Enslaved Design.|
|March 2022||First webinar presented by Dr Ben Jonker utilising the Digital Outreach Program.|
|June 2022||Kathy Meredith steps down as President after a 5 year tenure overseeing the preparation of the association to move into the digital world, and the elected new President is Lyn Donnelly.|
|July 2022||Second webinar presented by Prof Arun Aggarwal utilising the Digital Outreach Program.|
Meet the Committee
PRESIDENT & ACTING SECRETARY
30 years experience as a Systems Management Accountant
Creating effective and efficient processes, my family and my veggie garden
Education and management for business, the arts and heritage
Improving access to information for TN sufferers; Plants, soil, gardens and gardening; Wild sea, sky and landscapes; and writing
Management Accounting and Administration
Family, recycling, with TN Association support new members where I can
2022 (Previous President 2017-2022)
22 years NICU nursing, paediatric nursing, vaccine preventable & emerging disease surveillance since 2016
Family, travel, music, gardening, animals, geography & cultures.
-Providing support and access to resources for TN sufferers
-Reading – Travelling – Making Maps – Baking
Supporting fellow TN sufferers, my local community, theatre, film, travel & social justice.
-Making a positive difference to a person’s life and improving their wellbeing
-the awe and wonder of nature
-singing A Capella with Hot Ginger Chorus
Meet our Medical Advisory Board
DR. BENJAMIN JONKER
Dr Jonker is an Australian neurosurgeon with expertise in brain and pituitary tumours, as well as stereotactic and functional neurosurgery.
Ben has a particular interest in conditions treated with stereotactic and functional neurosurgery including trigeminal neuralgia, epilepsy, tremor and other movement disorders.
ASSOC. PROF. MARK DEXTER
Dr Dexter provides neurological surgery for adults and children. His main clinical interests are cerebrovascular surgery, brain tumours and neuro-oncology, trigeminal neuralgia and surgery for epilepsy. He is the head of Neurosurgery at Westmead and the Director of Neurosurgery at South West Area Health Service
Public Hospitals: Westmead Hospital, Children’s Hospital at Westmead
DR. JEREMY RUSSELL
Mr Jeremy Russell is an Australian trained neurosurgeon who manages all general neurosurgical conditions.
He has subspecialty expertise in both cerebrovascular and skull base neurosurgery, having obtained fellowships in both areas at the Toronto Western Hospital in Canada under world renowned neurosurgeons Prof Michael Tymianski and Prof Fred Gentili respectively.
Jeremy works at the Epworth, Richmond and Austin Hospitals, and has developed a keen interest in trigeminal neuralgia and it’s related conditions such as glossopharyngeal and geniculate neuralgia. He offers expert medical and surgical care for these conditions, ensuring all patients are fully informed and cared for in all cases.
PROF. ARUN AGGARWAL
Professor Arun Aggarwal is a highly experienced neurologist with expertise in chronic pain management, sport related head injuries and rebabilitation.
Professor Aggarwal graduated from the University of Adelaide in 1987 and went on to specialise in neurology, rehabilitation medicine and pain medicine and is a Fellow of the Royal Australasian College of Physicians, the Australasian Faculty of Rehabilitation Medicine, and the Australasian Faculty of Pain Medicine.
He is a Clinical Associate Professor at the University of Sydney’s Medical School and currently oversees a number of research trials examining Parkinson’s disease, trigeminal neuralgia and chronic neuropathic pain. Arun’s exceptional levels of experience and ongoing involvement in research and investigation continue to be widely recognised with over 50 manuscripts in peer-reviewed journals.
Today, Arun sits on the editorial board of the Journal of Clinical Trials and Clinical Case Reports. He is the current Chairman of the ANZ Association of Neurologists Neuro-Rehabilitation Sub-Committee and on the Medical Advisory Board of Trigeminal Neuralgia Association.
DR. HELEN BOOCOCK
Dr Helen Boocock joined the Health Alliance in late 2020 and has worked in health service leadership including supporting the provision of high-quality healthcare for 30 years.
She is a recognised leader in the field of oral health and has a clinical background in dentistry (public and private), particularly chronic facial pain and tertiary education. Most of Helen’s recent roles have been executive and senior management roles within Queensland Health, where she was engaged in significant service redesign and reform. Most recently, Helen has been the Executive Director for Community and Oral Health with Metro South Health.
Helen has a particular interest in models of care, health pathways and health care reform.
Working with the Health Alliance in this leadership role, Helen aspires to understand and interpret the rapidly evolving health care landscape and to help build and improve healthcare pathways in Queensland between primary care and hospital services.
ASSOC. PROF. LIAM CAFFERY
Associate Professor Liam Caffery is an Associate Professor in Telehealth and Director of Telehealth Technology for the University of Queensland’s Centre for Online Health.
Liam has a PhD in Medicine. His research is centred on pragmatic trials of telehealth services. Liam has a special interest in the use of telehealth for Indigenous health and rural health care delivery. He is involved in telehealth service development, delivery and evaluation across a broad range of telehealth services. Liam uses implementation research principles to understand why telehealth services work well in some scenarios and not others. He evaluates the effectiveness of telehealth from multi-disciplinary perspectives including clinical effectiveness, patient perspectives, economic aspects, organisational aspects, and socio-cultural, ethical and legal aspects.
Liam is Vice-President of the Australian Telehealth Society and an executive member of the International Teledermatology Society. He is a member of the Metro South Health Telehealth Advisory Group and a member of the Queensland Health Apps Working Group.
Liam has 25 years industry experience as a health informatician. His immediate past role was the Manager of Medical Imaging Informatics at the Royal Brisbane and Women’s Hospital. Previously, Liam had over a decade’s clinical experience as a diagnostic radiographer.
ASSOC. PROF. ANDREW DANKS
Associate Professor Andrew Danks is an experienced and expert adult and paediatric neurosurgeon. He trained in Victoria, and subsequently completed a research doctorate at Royal Melbourne Hospital and then a clinical fellowship at The Brigham and Women’s Hospital in Boston and Boston Children’s Hospital.
A/Prof Danks has worked in public and private practice at Monash Medical Centre and Jessie McPherson Private Hospital for 25 years, and has served as the head of the neurosurgery unit there for 22 years. He is heavily involved in training and supervision of junior staff and has been a neurosurgery examiner for the Royal Australian College of Surgeons for the last 8 years.
He has served as a member of the Trigeminal Nearalgia Association Australia’s Medical Advisory Board since 2004 and has contributed to all the scientific meetings since then. He has a very large experience in the medical and surgical management of trigeminal neuralgia. He has performed over 500 microvascular decompressions, and a similar number of balloon compressions and a more modest number of radiofrequency lesions for the condition.
A/Prof Danks believes in an open and candid style of practice, where the proposed therapies are discussed at length, to allow patients to come to a joint decision with the surgeon. Non-operative options are considered as well as the operative possibilities. In those situations where there is clear advantage to surgery, then this will be clearly recommended, explained and discussed to the level of detail required by the individual patient.