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The Trigeminal Neuralgia Association Australia has existed for 20 years!

Early in 2003 Irene Wood took the initiative and organised for the Incorporation of the Trigeminal Neuralgia Association Australia. After connecting with a handful of sufferers, Irene established the Sydney Support Group. For around 15 years Irene, as President, presided over an organisation which offered support and information with monthly newsletters, biannual conferences that brought together some of Australia’s and the world’s leading experts in research and treatment, a website and the bringing together of many of the nation’s top specialists as a Medical Advisory Board. Over time people put up their hands and volunteered to run Support Group Meetings in other states.

In 2017 Irene handed the reins to Kathryn Meredith who, during many terms of office, compiled an informative newsletter regularly, and oversaw a conference and the start of an upgrade to the website. She led a team of committed volunteers that kept the organisation going.

In 2022, Lyn Donnelly took the helm. During the past 12 months she continued with the website upgrading process, opened a YouTube account and designed, produced and distributed promotional TNAA branded products. All these activities increased the visibility of our organisation. Membership numbers increased as a result of the increased frequency of adding information onto the website, publication of a monthly Enews email, and through the webinars featuring experts in the field of trigeminal neuralgia. In addition, more members felt encouraged to volunteer their services.

Starting as a voluntary run organisation, the operation hasn’t changed. These days a seven person committee and eight Support Group Leaders are all that stand between our organisation as a vital going concern and being wound up. Financially the organisation has depended on membership fees, donations from members and major gifts from a couple of supporters. We have never received any government funding. That is, the past 20 years has been an extraordinary achievement with only a small band of people who, as volunteers, have been committed to letting sufferers know there are treatments, advice and support: that they are not alone with their trigeminal neuralgia pain.

Thanks to everyone who has made it all possible.

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Rare Disease Day February 28th 2023

Sufferers of trigeminal neuralgia know they are dealing with a rare disease.  Medical professionals rarely come across a patient with TN in their whole careers.   Diagnosis is difficult to obtain and the lack of neurologists, especially in Australia’s regional area, exasperate the isolation and despair for patients.

Every year the International Community come together to highlight the issues in February to raise awareness around rare diseases, and in October to highlight Trigeminal Neuralgia with the Light up in Teal event.

It is easy to feel helpless and isolated, but we urge all people diagnosed with TN to, tell your story,  create a family event which highlights the day, wear the colours and answer questions.

Doing nothing and waiting for change is not a great option.  Please tell us your story using this link.

Contact Us

Send a photo of your event or your outfit, and we will publish on our site.

How to Show Up for Rare Disease Day 2023

Light up and stripe up on February 28, organizers say, as preparations begin around the globe to raise awareness about rare diseases.

It’s not too soon to start planning for Rare Disease Day 2023, celebrated every year on the last day of February.

“It is a day to come together as a united community and raise awareness for rare diseases,” said Kristen Angell, Associate Director of Advocacy with the National Organization for Rare Disorders (NORD), at a recent kickoff webinar. NORD, based in the United States, collaborates with European patient group EURORDIS on the annual event.

The themes for Rare Disease Day 2023 are #ShowYourStripes and #ShareYourColours, giving the community a visible way to come together on February 28. Organizers recommend wearing your zebra stripes and lighting up homes and landmarks in the Rare Disease Day color palette (blue, pink, green and purple). In February 2022, CSL showed its support by lighting up Philadelphia’s Boathouse Row.

But perhaps the most impactful way to participate is by telling your personal story, scientist Sheldon Garrison said during the NORD webinar. It was a patient’s story that changed his entire career trajectory to focus on rare disease research.

“Whether that’s an opportunity for someone to inspire or influence someone like myself that’s on the research side of things, or to share the story with a legislator, or to share a story within the overall community, that is to me, a massive, massive win,” Garrison said.

Why wear zebra stripes for Rare Disease Day? The zebra is an icon of rare disease patients owing to a physician in the 1940s who taught medical students the maxim “if you hear hoofbeats, think horses, not zebras.” At the time, it was practical advice to suspect the most likely causes of illness and symptoms. But decades later, 7,000 rare diseases have been identified and supporters of the cause turned that horses vs. zebra advice on its head. Rare disease advocates took on the zebra as a beloved symbol. If you attend a rare disease event, expect to see zebra hats, zebra shirts and even TZ!, the zebra mascot of the Immune Deficiency Foundation.

Other ideas for getting involved in Rare Disease Day 2023 include attending virtual and in-person events, hosting your own event, raising funds for research, hanging flyers at local coffee shops or making social media videos that draw attention to rare disease resources.

“There are so many ideas out there, so be creative and find what works best for you and the community that’s around you,” NORD Donor Engagement and Events Manager Jaime Pacheco said.

Find more resources at the Rare Disease Day website.

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Webinar – Dr Jeremy Russell

Trigeminal Neuralgia Association Australia are delighted to provide our link to the webinar presented by Dr Jeremy Russell in Dec 2022.

This webinar completes our program for 2022

Dr Jeremy Russell is one off our distinguished Medical Board Advisors, and has generously provided his time and expertise to assist all sufferers of trigeminal neuralgia.

 TNAA Webinar – Dr Jeremy Russell Trigeminal Neuralgia Treatment Options – YouTube

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Webinar with Dr Jeremy Russell – Trigeminal Neuralgia and similar neuralgias. What can you do?

We are delighted to announce our final webinar for 2022 with Dr Jeremy Russell who is on our associations medical advisory board.

Dr Russell has donated a great deal of his time and we are grateful for the information he provides to our support group network and individual members.

The webinar will be recorded, and made available in due course.  I do urge our membership to add the details of the webinar to their calendars and join live, to have your chance to ask questions through the chat.

Monday 12th December at 7pm Eastern Summer Time (viewers in Queensland, South Australia, Western Australia and the Northern Territory please adjust for your time zone).

Topic: Trigeminal Neuralgia and similar neuralgias. What can you do?

 How to access? To click on the online link for this presentation go to our Facebook or Twitter accounts. Alternatively use the following:


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President’s Monthly Musings – Oct 7th 2022 Light Up In Teal

International Trigeminal Neuralgia Awareness Day October 7th Light Up In Teal

I am humbled by the turn out of our members and stakeholders, who took photos of the landmarks which were Lit up in Teal all around Australia.  Our Association members and Facebook members of the two groups below, made sure we had photos of the Eastern Coast sites.

Trigeminal Neuralgia Association Australia | Facebook

Trigeminal Neuralgia – Australia/New Zealand * | Groups | Facebook

We would also like to extend our heartfelt gratitude to Julia McDonald – the Secretary of the Trigeminal Neuralgia Western Australia, who organised photographers for the sites in Albany, Perth, Geraldton and Broom

Trigeminal Neuralgia Support Group – Strength Through Shared Experience (

We had a few minor issues – unfortunately Albany City Centre was not lit up, and The Glasshouse, in Port Macquarie lit up during the day which was not the agreement.  Broome Water Tower lit up in a fetching red colour, however – with the magic of desktop design apps we changed the colour to blue.

Despite the difficulties, we created a buzz.  Sufferers of Trigeminal Neuralgia could see a beacon of hope highlighting some magnificent buildings.  We know that the Teal Light provided support and a feeling of community to all sufferers.

I would like to thank Helen Tyzack our Vice President – who wrote the media releases and contacted media outlets all around the country, liaising with sufferers in each location to personalise their stories.

Townsville Bulletin wrote up a story about Haley Plaza in Townsville.

Haley Plaza





MYGC here on the Gold Coast also published a story about our event

Gold Coast “Light Up In Teal” –

I would like to thank our newest committee member Sarah Wilkinson, who created advertising posters for the facebook group pages to highlight the buildings to be Lit up in Teal.  The posters allowed our sufferers to attach their pictures if they wished, to those posts.  She and her husband Samuel, braved the pouring rain in Newcastle, and took some wonderful pictures of the Town Hall Clock

I would also like to thank our wonderful Support Group Leaders who took photos or arranged for photos to be taken.  We cannot function without you highlighting our activities at each Support Group Meeting

I will be providing slides to Toni Saunders the founder of the Light Up In Teal Awareness Day


I have put together a little video with the pictures we have received and there are a few more to be added.  I am still working on the file – but hopefully you will enjoy what we have put together so far.

 Trigeminal Neuralgia International Awareness Day October 7th 2022

Our Association will also send a slide to each City Council who participated and an email showing our gratitude for supporting us all.

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New Support Group Meeting – Lockyer Valley

Lockyer Valley Inaugural Support Group Meeting

We are delighted to announce that we are launching a new online Support Group Meeting in the Lockyer Valley area.  Our new Support Group Leader is Kim O’Donnell – you can read her story here.

Kim has a background in counselling, helps run her family business and deals with the day-to-day challenges of living with and managing Trigeminal Neuralgia.  Kim has worked through the Training Modules created by our Association to support our volunteers who are providing assistance, empathy, advocacy and education within the safety of a Support Group Meeting.

The changes imposed on us all through the two lockdown covid years, has taught us we do not necessarily need to be face to face in the physical world, to support sufferers.  We are utilising technology to enable our sufferers in Regional Areas to be able to connect and feel safe in our online space using the zoom platform and to feel part of our growing community.

The first meeting will be held on October 11th at 10.30am, a few days after our International Trigeminal Neuralgia Awareness Day on October 7th when we are lighting up cities around Australia in Teal.  In Brisbane the Victoria Bridge will be lit up on the eve of our day on Oct 6th and on the 7th the Gateway Bridges will look magnificent in Teal.  We had also put in a request to the City of Toowoomba but have not yet received a response.

If you are a Trigeminal Neuralgia Sufferer and live in the Lockyer Valley area or are in a region that as yet is not covered by our current support group network, please contact Kim, join her for her first meeting, allow her to help you in your journey.  We know that for many, this is the first step, and you don’t have to be a member to attend.

See you all there – remember

“you are not alone”






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TNA UK National Zoom Meeting 10th February 2022

Our Association has close links with Trigeminal Neuralgia Association UK – and they have informed us that they are holding a National Zoom Meeting on February 10th 2022 and all are welcome to login in – Please see below for details UK time so please check your cities corresponding time

“I am thrilled to invite you to our next ‘National Zoom’ on 10th of  February at 7.30 pm, when I shall be joined by our very own  Professor Joanna M. Zakrzewska who will be covering the new National guidelines on diagnosis and management of TN and how TN patients can use these to ensure that they get the care proposed in this document.  Also covered is how to make the most out of your consultation, either on line or in person.
Please download a copy   – see link below

I am pleased to announce that we shall be hosting a Mindfulness session within the National Zoom

I look forward to seeing you on zoom – please stay well as always

Anita Preem CEO”

to login please click on the blow link

Link to Zoom No Password Needed

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2022 FPA Conference – Facial Pain Association (USA)

Our association has close links to the Facial Pain Organisation in America – they are extending invitations around the globe for sufferers to register.

The 2022 FPA Conference is a two-day virtual event bringing together the worldwide facial pain community with experts who diagnose and treat people affected by facial pain

Presentations will include

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Furthering Trigeminal Neuralgia Awareness – Light It Up Teal 2022

We have started work on Lighting up Australia for 2022 to further Trigeminal Neuralgia Awareness.

We are delighted to announce Gold Coast City Council have agreed to Light up the Isle of Capri Bridge in Teal in support.

Thank you for enquiry on lighting Gold Coast assets to support International Trigeminal Neuralgia Awareness Day. I am happy to advise we can support this wonderful awareness campaign and light the Isle of Capri Bridge teal on 7th October 2022.Gold Coast City Council spokesperson

Below are pictures of the bridge lit up for an awareness campaign – it will look spectacular in Teal for the 2022 Trigeminal Neuralgia awareness campaign.

Isle of Capri Bridge – Gold Coast

Isle of Capri Bridge – Gold Coast

We aim to get buildings, bridges and homes lit up in Teal all around Australia. Please contact us if your town or city can help.

Want to make a difference in the life of someone who suffers from Trigeminal Neuralgia? Consider Membership to TNA Australia or a tax deductible donation.

Stay in touch by joining our newsletter – we’ll email a few times during the year with tips on how to best support people who suffer from Trigeminal Neuralgia.

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2021 Light Up Teal October 7th International Trigeminal Neuralgia Awareness Day

Light it up teal for Trigeminal Neuralgia 2021 - Kurilpa Bridge Brisbane

Buildings all around the world Lit up in Teal to raise awareness for sufferers of Trigeminal Neuralgia.

Our Melbourne and Gold Coast Support Groups also posed with a fabulous banner created by one of our members Matthew Puls, whose journey with TN has been extremely difficult and painful.

Light it up teal for Trigeminal Neuralgia 2021

Light it up teal for Trigeminal Neuralgia 2021

In Australia we had bridges and buildings in Brisbane and Perth lit up in Teal and they looked fantastic.

Light it up teal for Trigeminal Neuralgia 2021 - Victoria Bridge Brisbane
Victoria Bridge Brisbane

Light it up teal for Trigeminal Neuralgia 2021 - Treasury Hotel and Casino Brisbane
Treasury Hotel and Casino Brisbane

Light it up teal for Trigeminal Neuralgia 2021 - Kurilpa Bridge Brisbane
Kurilpa Bridge Brisbane

Light it up teal for Trigeminal Neuralgia 2021 - Perth Concert Hall
Perth Concert Hall

We are dedicated to raising awareness for providing support along with working with Medical and Dentistry Professionals to provide better care for all suffers.

Want to make a difference in the life of someone who suffers from Trigeminal Neuralgia? Consider Membership to TNA Australia or a tax deductible donation.

Stay in touch by joining our newsletter – we’ll email a few times during the year with tips on how to best support people who suffer from Trigeminal Neuralgia.