Melbourne Awareness Weekend 2023

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Members of the committee and other volunteers from all around the country headed to our Melbourne Awareness Weekend 2023 to meet up with James Hermans to collect our sets of Q Magnets, attend the One Night in Cairo fund raising dance festival, host a volunteer workshop and attend the Melbourne support group meeting.

It was certainly a full agenda and full of education, connection, fun and most importantly awareness.

Volunteers arrived in Melbourne throughout the morning, settled into their hotels and then got ready to meet James who gave us an overview of the science of the Q Magnets as a medical grade therapeutic appliance and how best to use them. Q Magnets Instagram

We were able to pre purchase 5 sets for our support group network due to a discount provided by James and generous donations received from Archipelago Designs who utilised our photo of the Isle of Capri Bridge on the Gold Coast Light up in Teal 2022, Dr Karen McCloy who recently hosted a webinar for the association and Bianca Parker whose father was living with TN and has now had surgery and is currently pain free.  Without our community’s generosity we would be unable to achieve our outreach program.  Thank you to every single one who has made a donated this year currently $4,660 and we understand the Dance Festival has also raised an extra $2,000.

Before the dance festival we met up at the Sands Hotel for a meal and to talk face to face – it has been a long time since volunteers have been able to do this.

After dinner we headed to the Duke of Edinburgh Hotel for the dance festival which included a DJ and photographer who were donating their time too.  The acts were numerous and highly talented, check out the following link to see the information about the festival @melbmedfest | Linktree and Dance Act Description

Sarah delivered the following speech to acknowledge the work Victoria has accomplished raising awareness.

“Hi everybody, 

I would like to extend my heartfelt gratitude to Vittorina for providing the Trigeminal Neuralgia Association of Australia with this incredible opportunity to speak before you tonight. It’s a privilege to represent the Trigeminal Neuralgia Association and share my journey with you all.

I’m here today to talk about something that may be unfamiliar to many of you – Trigeminal Neuralgia. It’s a condition that affects people in ways that can be quite challenging, and I want to help you understand it better.

Trigeminal Neuralgia, often referred to as TN, is a neurological disorder that affects the trigeminal nerve, which is responsible for transmitting sensations from your face to your brain. This nerve has three branches, hence the name trigeminal. Now, imagine the sharp, shooting pain you might feel when you accidentally bite your tongue or have a dental issue – TN is like that pain, but on a whole different level.

People with TN experience sudden and severe facial pain, which can be triggered by simple activities like eating, talking, or even a light touch to the face. It’s often described as an electric shock or stabbing sensation, and the pain can be excruciating. 

The causes of TN can vary, and it often occurs spontaneously, though sometimes it can be related to underlying conditions like multiple sclerosis or nerve compression. But one thing is certain – the pain it brings can be debilitating and life-altering.

The Trigeminal Neuralgia Association of Australia, or TNAA, is a beacon of hope for individuals like me who have been diagnosed with TN. It serves as a vital support network, providing guidance, knowledge, and empathy to those afflicted by this challenging condition. They offer a helping hand to navigate the treacherous waters of TN, ensuring that no one feels alone in their battle against this relentless pain.

Now, I’d like to share a personal account of my own struggle with Trigeminal Neuralgia. I was diagnosed with this condition at the age of 25 in 2020, but my journey with the pain began even earlier, around 2016. It all started with a slight pain, an aching sensation that would creep from my ear and spread to my jaw. This recurring pain led to numerous dental visits, teeth extractions, and misdiagnoses, including being told I had a sinus infection. Each episode seemed to be more agonising than the last, sometimes forcing me to take days off from work.

One strange aspect of Trigeminal Neuralgia is that when I’m not in pain, I tend to forget the intensity of the agony I experience. It’s almost like a coping mechanism. I find it challenging to explain this pain to medical professionals, family, friends, or anyone who hasn’t experienced it firsthand. In my discussions about TN, I tend to downplay the severity of the pain and its profound impact on my life.

This is where the Trigeminal Neuralgia Association of Australia has helped me. Through their support group meetings, I’ve found a network of individuals who understand the unique challenges and struggles of living with TN. These meetings have been instrumental in my journey, not only for sharing experiences but also for learning about various treatment methods and potential medical procedures.

I’ve been privileged to serve as a committee member for TNAA since April 2022, and I’m deeply committed to increasing awareness and helping others access the essential resources provided by this association.

The Trigeminal Neuralgia Association of Australia, under the dedicated leadership of Kim O’donnell, the association’s president, is tirelessly dedicated to supporting individuals with TN. TNAA facilitates support groups where we can share our experiences, publish research articles to advance our understanding of the condition, and distribute newsletters to keep us informed, working diligently to secure funding for research, advocacy, and outreach, all aimed at improving the lives of those with TN. Kim’s unwavering commitment is an inspiration, and it reminds us of the importance of their mission.

I stand before you not just as a patient but as a testament to the hope and resilience that the Trigeminal Neuralgia Association of Australia provides. They have been a lifeline for me, a source of information, support, and camaraderie. Through their efforts, we are not alone in this battle against Trigeminal Neuralgia, and with their continued support, we hope for a brighter future for all those affected by this debilitating condition.

Before I conclude, I would like to take a moment to extend our heartfelt gratitude to the incredible individuals who have made this evening possible. To our committee and leaders, thank you for coming tonight, you all work tirelessly to raise awareness, provide support, and advocate for those living with TN. They are the pillars of strength and beacons of hope in our community, offering a sense of belonging and a lifeline in times of need.

And to everyone else, thank you for your attention. Please consider supporting the TNAA in their vital mission. Together, we can make a difference.”

We all had a wonderful time, and we were encouraged to dance during the intervals reluctantly at first, but some of us found we could indeed perform a little bit of belly dancing.

The next morning, we headed off to the Maroondah Federation Estate run by Maroondah City Council who supplied the room for the workshop free of charge and delivered a delicious lunch platter for our attendees.
The workshop was also attended by the Melbourne support group leaders Brenda, Alan and Rob, and included a presentation by Lyn Donnelly on how to navigate the website – which can be downloaded below, and an interactive presentation by Nora English covering the Kawa Model to help with emotional story telling.

Following the workshop, we mingled and shared our stories over lunch and then it was time for the Support Group Meeting.  The Association was delighted to be able to hand over a laptop to Brenda, which was purchased from the grant received from the Cromwell Property Group in 2021.  The group will now be able to show their attendees articles and presentations on the association’s website.  We also provided the group with a Q Magnet Set to enable their group to participate in the Q Magnet Pain Management Trial we are collaborating on.

Tags: melbourne belly dancing festival, trigeminal neuralgia awareness, volunteer team event, volunteer workshop, working together

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