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President’s Reflections – Oct 2023

Hello everyone I hope you enjoy this edition of my ‘President’s Reflections’.

National Support Line

During the past month, I have accumulated 347minutes of support time on the National Support Help Line for people living with TN.

Support Group Leader Meeting

I held our first support group leader meeting for the year, via Zoom 08/09/2023, I did the facilitating myself. Our support group leaders are from all walks of life and from across Australia, however the one thing we all have in common is TN. Our leaders presented many ways to hold a meeting, which worked for everyone. We discussed our part to play within the association’s framework and the best ways to help each other and our members. It was a successful meeting because we all collaborated with each other and got to know each other in a relaxed atmosphere. I’m very proud of all the support group leaders who give so much to help other people living with TN.

Support from Website

It has been my privilege to provide support for 11 new members that have asked to be contacted, via our website. I have provided them with links to our website, for articles that can support them. I’ve given them Doctors names and phone numbers. I’ve shown them how to find things on our webpage.

Once again, I’ve listened to their brave journeys with TN and provided a safe environment for them to talk and ask questions. It breaks my heart listening to their stories.

Volunteer Workshop

The Workshop for our committee and support group leaders is organised. Many thanks to Lyn Donnelly for her help and the countless hours of absolute skill. I believe the agenda for the Melbourne trip is finished.

A special thanks to Peter Gough for organizing our arrival, departure and transportation while we are in Melbourne.

Webinar

Our first webinar for this year was held in August. The webinar was a terrific success with Assoc. Prof. Liam Caffrey chairing and Dr. Karen McCloy presenting and answering questions from the audience as well as questions from our members. Dr. McCloy is a wonderful presenter. She can fit a lot of education in, in a small amount of time. We are planning to hold a lot more webinars in the near future. Watch this space.

Instagram-Trigeminal Neuralgia Association Australia is on Instagram.

Awareness event

Our new Instagram account continues to gain momentum. Lyn is doing a great job taking care of our Instagram account. Lyn has many projects in the process at the moment. I will keep everyone posted.

Our Association has a lot of good things happening soon-I’m excited.

On A Personal Note:

It’s a beautiful time of the year…

  1. Flowers are blooming.
  2. Baby birds being born.
  3. The smell of new blooms.
  4. The sound of birds singing.
  5. No wind.
  6. No cold weather to worry our trigeminal nerve.
  7. The smell of a spring day.
  8. The first cup of coffee on a beautiful spring day.
  9. The sun’s rays.
  10. Sunrises on a spring day.

“With hope”

Kim O’Donnell

Lockyer Valley/Toowoomba 0402 982 118

 

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Measuring Success

Measuring success

As  a volunteer charity with limited funds and even more limited people power, how can we be measuring success in the trigeminal neuralgia awareness space?

Big business has data analysis departments to measure interaction, web traffic user engagement etc.  This analysis can drive efficiency, provide audience evaluation, drivers to improve user investment and even financial investment.

But what can a small charity utilise to understand if they are meeting the needs of the space that they operate in?

Big questions indeed.  Here in our association we can utilise a few Google Analytics, monitor member numbers, record contact time via all media and evaluate our social media engagement.

However the most powerful motivation is hearing from our current and previous members.

We do not feel that we have failed our vision if a member does not renew their membership. That member may have found the information they required, received medical intervention and are no longer in pain, or had help from a Support Group Leader and feel confident to continue their journey without requiring our advocacy.

We have created a survey for members who have not renewed, and encourage everyone to give us that final gift of time to complete the survey, and provide insight to the association.  You can complete the survey by clicking HERE

Member Feedback

One of our previous members Chris, took the time to provide his reflections – see below.

I was an enthusiastic member of TNAA.  My first attendance was at the last meeting held at Toongabbie.  I found out more there than I had from doctors in the previous two or three years.  The meeting facilitator, Irene Woods, said are you coming to our next meeting in town and I said probably not, I have have found everything I want to know today.  She then pointed out that I should come to assist other sufferers who come to meetings.  That was sensible so I hardly missed another meeting until COVID struck.  I took minutes, chaired a few meetings when Shane was unable to come and went to the conference at Coogee.  I also had the MVD operation (Mark Dexter) in 2017 and have not had a problem with TN since.  I did, however, get an arteriovenous malformation which probably resulted from the operation.  That is monitored by Dr Dexter.

I was an active member until COVID and probably still would be if COVID hadn’t appeared.  But, like so many others, I have a pre-COVID and post-COVID life, I am in my late seventies and just haven’t got back into the swing of things in some areas.  I cannot see myself rejoining but would would be quite happy to do so if a group ever started down near where I live (Kiama, South Coast).

Going to that first meeting was one of the best things I have done in my life.

Hi Chris

Thank you for the feedback we really appreciate you taking the time to let us know about your experience.

Can we please use your feedback in an article we will publish to our website.

Covid certainly put a stop to so many things, especially for people who needed to protect their health. So many people we talk to have the same pre and post Covid life change.

However it also forced us to get more proactive with creating a digital platform to allow our community to connect, with the website and ENEWS. The online support group meeting format has helped many from remote and regional areas to connect too.

Thank you for your time volunteering and helping so many others in their time of need. There is no price on providing comfort support and hope 🩵

Hello Lyn,

Thanks for your email and I am happy for you to do whatever you like with the material I sent you. I will always look back on my involvement with the Association with fondness because it gave me the knowledge to deal properly with my condition. I remember my first meeting with clarity. It was the last meeting of the Toongabbie branch. Gwenda and I got there a bit earlier and there were hundreds of Indian Australians celebrating an event. We were enveloped in an ocean of wonderful colours and the smell of wonderful food but nobody knew anything about the TNAA. We were nearly ready to leave when a few members turned up (including Irene) and my education began shortly afterwards.

This survey and email interaction is repeated by every one of our volunteer support group leaders.  They make themselves available to ensure our community is provided education and advocacy.

Other statistics

How else do we know we are making a difference?   Our Facebook page has 1,300 members.  We are a small charity in a rare medical  condition space, with very little general public awareness.  However since our new website launched there has been over 45k downloads of information and a daily average of 78 document downloads.  We receive between 4-5k website visits every month and 95% of users are new users.

This suggests to us that we are making a difference

TNAA stats

Member Numbers

Our final indicator is a bit subjective.  We currently have 315 financial members,  many have renewed and have been members for several years.  However since we went live with our new website 146 people have not chosen to renew.  We believe we have successfully provided the support these members required at the time, and they are now living their best lives.

We regularly attract new members with an average of 8 new members a month.  We strive to ensure every new member receives support and compassion and understands about our support network.

Thank you to our volunteers who donate their time and experience.  Thank you to our financial members who allow us to operate.  Thank you to our Medical Advisory Board members who do so much for our community.  Together we can ensure “you are not alone”