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New Members and New Orders

Sometimes as volunteers we get caught up in the day to day stuff that we do, and can possibly lose sight of the impact our Association is having on members and non- members alike.

On May 6th we were getting ready to attend a friend’s 60th Birthday Party.¬† We met Gary when we had only just arrived in Australia as migrants from the UK back in 2002, and we have many happy memories of time spent together.

The venue was also hosting a karaoke event, and I had been fixating on whether the additional noise was going to be too much for Patrick.¬† How he was going to cope with talking to people we hadn’t recently seen? and how the late night was going to effect him the next day?¬† I am sure this routine will be very familiar to many of our members.

Our son was dropping us off at the venue and while he drove I noticed a couple of orders for our Emergency Department Card, pop up on the notification screen of my phone.  No worries I thought to myself, I will deal with those tomorrow.

I am delighted to report we had a great evening, Patrick talked, joked and laughed, ate drank and caught up without too much pain and sensibly rested up the next day.

I turned to process those couple of orders and ended up whooping around our living room when I discovered we had 19 orders for our Emergency Department Card, four orders for membership and donations. I have no idea what happened on the 6th of May which led so many people to our website to place orders.  If I knew I would replicate every week.  This month we have so far had 8 new members join our Association.  Many have asked for support and our compassionate president Kim has contacted them all to offer hope.

We plug away adding articles to our website every month, reaching out for volunteers, creating newsletters and managing support group meetings.¬† Knowing we are making a small difference in so many people’s lives is quite frankly humbling.

So a huge thank you to all those who found us in May.¬† We hope you bookmark us and check in often.¬† But most of all, if we have given a lift to just one person, then sometimes that’s enough.

“You are never alone”

May 15 to May 21 is also National Volunteer Week where those who volunteer their time in all walks of life are shown some appreciation.  A big shout out to all of our associations volunteers, you do an amazing job.

Volunteer

 

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Melbourne Support Group Meeting – New Beginnings

The Melbourne support group meeting has been on ice since our wonderful Emelye Lovell stepped back from volunteering.

We have been actively looking for a volunteer to step forward to take on the role of face to face Support Group Leader for Melbourne.

We are delighted that Brenda Young has agreed to take over heading the meeting with support from Allan Collard.

I am hopeful that the Group will support Brenda with minute taking etc and that someone with computer skills will volunteer to assist her with the preparation of these minutes for issue to “head office” for inclusion in the regular Newsletters.

One way minutes can be collated easily, is if each member writes down their updates, perhaps by email or phone message so the minutes can be easily collated.  Perhaps we can set up a webcam to record the meeting and the minutes can be easily collated.

Do have any technically skilled people who can assist Brenda with this?

The Melbourne face to face meetings are so important to our community – please help us ensure they are successful.

We will be looking to the members for some practical & moral support for Brenda in the Convenor role, and that she is prepared “to give it a go” in the hope that the Group can continue to function on an ongoing basis.

Our Association has been in continuous service for trigeminal neuralgia sufferers for 20 years, let us pull together to ensure we continue to deliver support to our Melbourne community.

Please use our contact form to offer assistance or suggestions.

The next meeting will be held on June 10th

 

 

 

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President’s Monthly Musings – Sep 2022 – Volunteering

The committee has had many conversations over the last year around  the subject of how to attract volunteers to help our Association.   I understand it can be a daunting thought,  not only having to deal with the restrictions Trigeminal Neuralgia imposes on sufferers,  but then, add the thought of offering your help, when you have no idea how you are going to feel from day to day,  and sometimes moment to moment.

Then of course there are the questions, help to do what?“, and “for how long?”

You don’t launch yourself into the unknown in normal life,¬† so why would you do so to volunteer.

Life decisions are generally built via research and investigation,  coupled with a time and cost evaluation,  what job do I want?  where shall I go on holiday? where do I want to live? what schools will the children attend?

So it is a bit naive to think a person will volunteer their precious time, even to an Organisation that they care about, without following through with a robust consideration process.

My own journey into becoming a volunteer has been brewing in the back of my mind for many years but without a place to reside.  When our family was young life was all about schooling,  careers,  bills and just making it through the normal dramas of life.

We migrated to Australia in 2002, and I became aware of many volunteer organisations, SES,¬† Rural Fire Service,¬† The Lions, Life Surf Saving being the main ones.¬† In the back of my mind I thought I might get involved with one of these organisations one day.¬† And that is where the thought resided for many years, as we created our new life in¬† Australia…..dormant.

My working life was always extremely busy,¬† very demanding, with long hours, so to volunteer was not an option at that point.¬† ¬†Then grandchildren came along,¬† and precious spare time was devoted to them.¬† ¬†In my mind I was volunteering my time to help support them and provide activities that busy parents just didn’t have time for.

And then I required open heart surgery and a pacemaker,¬† which slowed me down a bit.¬† ¬†I took the opportunity to retire early,¬† life is too short after all.¬† ¬†Perhaps this was the time to volunteer?¬† ¬†Not so,¬† I worked through my physical recovery, then¬† worked through my mental journey of reconciliation that a little piece of machinery implanted in my chest,¬† was keeping me alive.¬† Then the realisation, that, coupled with getting older, I didn’t have the physical stamina to run around like I once did or do hours in the garden.

So I adjusted to my new normal until once again, it was not.¬† ¬†We were in the process of executing the next stage of our life in 2017,¬† down sizing to a cabin on our sons property,¬† and a countdown to Patrick’s retirement,¬† when he started to get weird symptoms and feeling generally unwell.¬† ¬†In that time he was keeping the magnitude of what he was dealing with,¬† to himself,¬† and it wasn’t until 2020 that he was finally diagnosed with bi-lateral Trigeminal Neuralgia.

And that is where the thought of volunteering popped up again.¬† ¬†We attended our first support group meeting in April 2021 and it was mentioned that the Association needed a volunteer to take over the Secretary’s role.¬† ¬†If I am honest with myself,¬† the skills required matched what I could offer,¬† and¬† at that time¬† my focus was on Patrick’s well-being and learning about Trigeminal Neuralgia.¬† Was this perhaps, the way I could connect with people and professionals who could miraculously fix him?¬† Of course when I was handed over the duties,¬† my business background kicked in,¬† and so started the process of increasing and improving our digital outreach program.

I have a results driven approach to everything in my life, so for me, if I was going to volunteer,  I needed to set in place a structure where our Association could grow.  As President I have a duty to ensure my tenure complies to our mission statement to advocate and support all sufferers of Trigeminal Neuralgia and that is my prime focus.

I haven’t been the only volunteer to step up in the last 18 months.¬† ¬†This year Sarah Wilkinson,¬† a young suffer of Trigeminal Neuralgia living in Newcastle, has joined the Committee of Management too, and offered her skills in spatial data analysis.¬† Gay Roberts in Adelaide, who has been helping our long standing Support Leader Graham Boyer, took over the lead role in the Support Group.¬† Kim O’Donnell, a new member who has experience as a counsellor,¬† expressed an interest in setting up a Support Group in her area the Lockyer Valley.¬† The inaugural meeting is next month.¬† And I welcome these amazing people to our volunteer family.

In business you have to provide a support framework in order for people to excel,¬† and Charity’s must operate in the same way.¬† ¬† We value all of our volunteers and in order to support them, to support you,¬† we have now completed a training module for volunteers to work through to reinforce knowledge, and act as a reference resource.¬† All of our new volunteers are working their way through the modules at a pace that works for them.

We recently published a member’s survey and a couple of members have expressed a wish to volunteer in some capacity.

So that brings us back to¬† the “what am I volunteering for?” and¬† “how long am I volunteering for?”

To answer these questions we are creating an organisational chart to show the areas we need people to volunteer,¬† and if you have skills that fit,¬† why not consider our¬† “Volunteer for a Year”, or “Volunteer for a Project”, program which will be launched next year.

We don’t want anyone to feel a heavy weight of responsibility when they say¬†yes to volunteering.¬† ¬†We want every volunteer to feel excited and motivated and able to look back on their year, or project¬† and feel accomplished and proud.¬† Our Association has provided services for¬† 20 years, making a profound difference to many people and when you can make a difference to just one person¬† then everything is worth while.

I recently attending an online training session run by the Facial Pain Association in America, and one support group leader was worried that at her meetings, she sometimes had only a couple of attendees.¬† ¬†What the counsellor said was very thought provoking…

We have to put aside our own expectations, and ideas of success,¬† and concentrate on the needs of the people who we are volunteering to help.¬† If just one person attends and receives the help and support they need,¬† isn’t that enough?

So what roles do our Association need to fill

  • we need a Twitter account manager
  • we need fund raisers,
  • we need a membership manager,
  • we need a secretary,
  • we always need people willing to run support group meetings,¬† online and in person,
  • we need a replacement Support Group Leader to take over the Melbourne area,¬† because our current leader Emelye, who has been in the role for many years, needs to step away and¬† concentrate on other things,
  • we need a person to take on the Light up in Teal International Awareness Day each year
  • we need event planners to help us organise conferences and webinars
  • We need creative people who can utilise our Canva Licence and produce marketing material
  • We need an indexer to work through our newsletters, so we can reference material already produced
  • we need content writers to provide articles for our website

Quite honestly the list of things is huge,  but just like eating an elephant a bite at a time,  if we create an opportunity for a sufferer or family member to contribute just a little,  we will be serving all Trigeminal Neuralgia sufferers to the best of our ability.   I really cannot ask for more.