Project history and our first five years

Wondering how our May12th International ME/CFS Awareness Day Australia project and the May12th.org.au website came to be? Read on to learn more about our project history, and the support we received between 2016 and 2021.

 

How our May12th Australia project was born

 

In 2015, a volunteer of ME/CFS and Lyme Association of WA had the idea to have a national website for Australia’s participation in May12th International ME/CFS Awareness Day and Light Up The Night each year.

This volunteer had been helping organise Light Up The Night buildings in Perth, Western Australia, and realised both Light Up The Night and May12th International ME/CFS Awareness Day were being underrepresented in Australia and on social media. They envisioned having a place where we could come together and collaborate as a community each year would increase visibility and offer a pool of time, skills, and efforts. All of the ME/CFS organisations were run by volunteers, most with the illness, so saving time, energy, and avoiding duplication was very important and common sense as organisations and as a community.

The WA management committee at the time approved the proposal, and a proposal was also put together to send to the other ME/CFS organisations in Australia. We received early buy-in and a willingness to support the project from some volunteers at ME/CFS South Australia.

In 2016, ME/CFS organisations were formally invited to participate and be involved. They were informed that the website would be to share Light Up The Night information and photos, and May12th related events happening around Australia. Most importantly this would be Australia’s official awareness website for May12th International ME/CFS Awareness Day.

The organisations who responded in 2016 wanting to support this project and work together for May12th Australia awareness were:

  • Bridges & Pathways Institute Inc.
  • Emerge Australia Inc.
  • ME/CFS and Lyme Association of WA Inc.
  • ME/CFS Australia Ltd.
  • ME/CFS South Australia Inc.

 

 

Coordinating Light Up The Night Australia

 

Between 2016 and 2020, a volunteer at ME/CFS South Australia took up the initiative to coordinate who in each state or local area was organising buildings and landmarks for Light Up The Night Australia, including in locations where there were no ME/CFS organisations organising locations in their state.

This ME/CFS South Australia volunteer contributed significant time to this coordination each year, filling out booking forms for local councils, and relaying the information for the website and social media, and we are very thankful for their contributions. We would not have had so many buildings and landmarks light up blue each year without their continual dedication and support.

 

“A lot of coordinating and record keeping goes into Light Up The Night each year. This wonderful lady from South Australia put a lot of time into this each year for 5 whole years, and really helped pull it all together. She is truly amazing! She does not want any credit for her volunteering, but she knows who she is.”

 

These days, ME/CFS organisations are primarily responsible for organising buildings and landmarks for their local area. We encourage ME/CFS organisations to contribute to Light Up The Night for their local state or area each year.

For 2021 onwards, there was an official form to submit Light Up The Night Australia information so that information is streamlined and to save time for everyone involved. The form functioned very well for 2021, and will remain in place for next year.

Support received between 2016 and 2019

 

Between 2016 and 2019, we received the following primary support.

ME/CFS South Australia Inc.

  • Volunteers contributed to helping put together some of the website’s content, sharing social media posts, notifying us of new events we could promote, and organised some Light Up The Night buildings and landmarks.
  • ME/CFS South Australia have been our largest supporters, and contribute the most hands-on work each year. We thank these SA volunteers for their commitment and dedication each year.

#MEAction Network Australia (MEANA)

  • Between 2016 and 2018, a handful of volunteers from the MEANA Facebook Group contributed with drafting some of the website’s text, notifying us of new events we could share (such as #MillionsMissing events), and organised some Light Up The Night buildings and landmarks in their local area.
  • Their support and time in the early years is appreciated.
  • Note: #MEAction Network Australia has since changed their name to ME Advocacy Network Australia.

ME/CFS Australia Ltd.

  • ME/CFS Australia Ltd. provided our organisation a $1,500 grant toward May12th website expenses in 2016, as part of their organisation’s contribution to funding projects that would benefit our Australian patient community. (Two other ME/CFS organisations were also grant recipients during that grant round).
  • This $1,500 has allowed our team to focus on May12th rather than also spending that time fundraising to cover expenses, so we thank ME/CFS Australia for their financial support.
  • Some buildings and landmarks were also organised by ME/CFS Australia Ltd for Light Up The Night in some years.

ME/CFS and Lyme Association of WA Inc.

  • Volunteers from WA helped with Light Up The Night, the website, social media, and some project coordination and administration.
  • WA has also covered some project expenses outside or above the $1,500 grant monies.
  • We thank these WA volunteers for their substantial commitment and dedication each year.

We thank these three charities, and the contributors from the MEANA Facebook Group, for their contributions in our first few years.

We always encourage people to volunteer and donate to their local ME/CFS organisation, and if you value the contributions and support provided above it’s the best way to say thank you to them.

Support received for May12th 2020

 

The year 2020 brought with it the COVID-19 pandemic and lock-downs.

Due to this, in-person events were all cancelled around Australia, including #MillionsMissing which became virtual.

Light Up The Night 2020 was also in reduced mode, as many councils and buildings were closed, working from home, or not running any awareness lighting.

Our volunteers and supporters took the time to have a well deserved break from their tireless volunteering, and only assisted in a limited capacity.

ME/CFS South Australia Inc., ME/CFS Australia Ltd., and ME/CFS and Lyme Association of WA Inc. each contributed to our national May12th awareness project for 2020 where they were able to.

Several community members and organisations also helped in organising some local Light Up The Night locations, or planned online events.

 

 

Support received for May12th 2021

 

In April 2021, we welcomed two new supporters for our May12th awareness project:

  • ME/CFS/FM Support Association Qld Inc.
  • National Centre for Neuroimmunology and Emerging Diseases (NCNED)

Light Up The Night 2021 was also in semi-reduced mode, as due to COVID-19, a few councils and buildings were still not back to running any awareness lighting.

ME/CFS South Australia Inc., ME/CFS Australia Ltd., and ME/CFS and Lyme Association of WA Inc. each contributed to our May12th awareness project for 2021 where they were able to. Many give tirelessly to their local ME/CFS organisation throughout the year.

Several community members and organisations also helped in organising some local Light Up The Night locations, or planned online or in-person events.

 

 

Want to be part of the next few years?

 

We look forward to working with new and existing supporters in the years to come.

We are also welcoming back past supporters, looking to expand our team size and welcome new volunteers, and look forward to collaborating with those who wish to support May12th International Awareness Day in Australia.

If you would like to be part of that, please reach out to us any time via our contact form.

 

Financial donations are greatly appreciated. Donations can be made here.

Wondering why no individual’s names were mentioned above?

We always ask and offer to give credit to our volunteers and helpers. However, all have declined to be named for their help. They are content helping us and our community out in a selfless manner, and have said they don’t feel a need to be credited. This speaks volumes to many in our community being here for the cause, not for themselves.

This page was last updated on 12 May 2021

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