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President’s Monthly Musings – Nov 2022 Year of Progress

It has been a busy month again and I cannot express how proud I am of our community.  So much progress has been achieved in the last year and I feel it is appropriate to spend some time and reflect on just how far we have all come.  We are heading into the Christmas season and soon everyone’s focus hopefully will be with family and friends celebrating together.

To appreciate the massive amount of change, I must cast my mind back to June 2021 not long after I became secretary, and talk turned to creating a new website.  The fact that the committee had already sanctioned a new website was hugely exciting to me, because this was an area that matched my professional background.  In the next few months, the web design was agreed, and work started.  Normally in a business arena it would take a full year to design, collaborate and create a platform to just get to a test stage.  However, we pulled it off in 4 months and went live in November 2021.

Although we had been working in the trigeminal neuralgia field for 20 years, we were not easily accessible.  The new website allowed our members to manage their own accounts, receive automated reminders to renew membership, pay in a way that suited them, contact us, provide members stories, find news articles and feel connected to our community.

Having this platform has enabled the association to offer opportunities to volunteer and help our community.

This year we have recruited a new committee member, Sarah Wilkinson who is contributing to the decision making and hopefully will be able to set up a young patient advocacy platform.  To have to bear the pain of trigeminal neuralgia at any age is difficult, but to have to deal with it from such a young age is heart breaking.

And we also welcomed the return to committee of Helen Tyzack elected as the Vice President.  Helen has worked tirelessly for months on our strategic plan and new updated constitution along with her duties at Tasmania’s support group leader.

Gay Roberts in Adelaide has taken over the running of that support group.  She gained the confidence to do so by working through our online training program, reinforcing her knowledge and providing a reference library to support her.  She currently runs face to face support meetings but next year she is keen to offer online meetings for her regional members.  How wonderful that Gay has progressed with such confidence, from telling us she couldn’t deal with technology, to wanting to run meetings using technology.  I am enormously proud of her.

Kim O’Donnell contacted us in August, keen to set up a support group in the Toowoomba / Lockyer Valley area.  I was camping at Evens Head when I received her message and practically danced with excitement telling Patrick when he returned from surfing.  Kim also worked through our training modules, and she is now offering a fortnightly online meeting on a Tuesday at 10.30am.  You don’t have to live in the area to connect to Kim, she is intent on helping anyone with trigeminal neuralgia, to support and offer advice.  She has set up a facebook group to advertise her meetings, so please do join her and have a chat.

This month we were contacted by Jodie Schneider from Townsville, who is interested in training as a support group leader and hopes to run a support group in Townsville.  Jodie contributed some wonderful pictures of Townsville for our Light Up in Teal International Trigeminal Neuralgia Awareness Day.    We welcome her to our team, and I wish her every success in her training.  I am sure Jodie will create a wonderful support community in her area.

We are producing our last webinar of the year, a presentation by Dr Jeremy Russell – click HERE for details.  How wonderful that we were able to produce 4 webinars this year to provide education and information.  Our support group leader volunteers make a difference to someone at every meeting.

quote from a former member

I’ve been a member since 2007 when I was in absolute agony when the condition I’d had since 1997 flared up .  The support I received from everyone there was so wonderful, as I always had to explain what was wrong with me  as nobody have ever heard of it.  Fortunately the wonderful Dr Dexter operated in February 2008 & I’ve been painfree ever since.  I kept going to meetings at Toongabbie for some years to tell my story so that people would know there could be a happy ending.  Thanks for the memories.

quote from a donator

My pleasure my Mum is a TN sufferer, she has for the past 10 years, truly a remarkable woman to have the strength to manage this awful illness.
Hopefully we can find a cure🙏🏽

So, as we head into the Christmas Season – I wish all of our volunteers and members the very best of greetings.  I hope that pain stays away, the weather stays mellow, the food is easy to eat and chatting brings you pleasure.

here is to 2023 – remember “you are not alone”





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