Our Association
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.
Our Story
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.
Our History
| 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 organization |
| 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 organization |
| 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 Group Foundation 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 utilizing 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 utilizing the Digital Outreach Program. |
| 2023 | Newly elected President, Kim O’Donnell. |
| 2023 | Melbourne Workshop held. |
| 2024 | Elected President, Kim O’Donnell. |
Meet the Committee
PRESIDENT
Kim O’Donnell
ELECTED
2023
PROFESSIONAL BACKGROUND
Family Bricklaying Business and Counselling
PASSIONATE ABOUT
Providing support to everyone living with trigeminal neuralgia, my grandchildren, my family, my husband, my garden and my family of local magpies.
VICE PRESIDENT
Peter Gough
ELECTED
2017
PROFESSIONAL BACKGROUND
Retired educator
PASSIONATE ABOUT
Supporting fellow TN sufferers, my local community, theatre, film, travel & social justice.
TREASURER and Membership Manager
Angelo Trovato
ELECTED
2014
PROFESSIONAL BACKGROUND
Management Accounting and Administration
PASSIONATE ABOUT
Family, recycling, with TN Association support new members where I can
SECRETARY
Carol Benda
ELECTED
2024
PROFESSIONAL BACKGROUND
Retired – Legal
PASSIONATE ABOUT
-Helping TN association and supporting people with TN
-Reading a good book
-Taking long walks
COMMITTEE MEMBER
Gay Roberts
ELECTED
2024
PROFESSIONAL BACKGROUND
Legal Secretary
PASSIONATE ABOUT
-Providing support and access to resources for TN sufferers
-Reading – Travelling – Cooking
COMMITTEE MEMBER
Jodie Schneider
ELECTED
2024
PROFESSIONAL BACKGROUND
Education
PASSIONATE ABOUT
Providing support to people living with TN
Sewing, walking, and dog training
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 the Southwest Area Health Service
Public Hospitals: Westmead Hospital, Children’s Hospital at Westmead
R. 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 rehabilitation.
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.
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.
A/Prof Andrew Zacest—Neurosurgeon
A/Prof Andrew Zacest is an Australian trained neurosurgeon with dual fellowship training in Neurosurgery (FRACS) and Pain Medicine (FFPMANZCA) in Australia and the US. He is a Clinical Associate Professor at the University of Adelaide and Consultant Neurosurgeon at the Royal Adelaide and Calvary Adelaide Hospitals.
His clinical and academic interests include neuromodulation for brain and spinal disorders, trigeminal neuralgia, brain and spinal tumours and radiosurgery. As well as teaching, writing and presenting papers he is an examiner for PM and section editor for the ANZJS.
His non clinical interests include travel, life long learning of history especially Graeco- Roman, arts and literature, physical fitness and time with his wife and family.
Dr Ma—Neurosurgeon, Brisbane
Dr Norman Ma joined Briz Brain & Spine in 2017 and has specialist skills in the surgical treatment of both adult and paediatric brain and spine. Born in Hong Kong before growing up in New Zealand, Dr Ma completed his undergraduate medical degree at the University of Auckland.
He completed his advanced neurosurgery training in Brisbane, Melbourne, Auckland and Christchurch. Dr Ma completed a Paediatric Neurosurgical Fellowship at the Mater Children’s Hospital, Brisbane in 2014 and also undertook a Functional Neurosurgery Fellowship at the Southmead Hospital in Bristol, United Kingdom in 2016.
Special Interests: cranial neurosurgery, neuro-oncology, functional neurosurgery, pain surgery, paediatric neurosurgery.
