MPN-MATE RESEARCH FOUNDATION

An Australian Registered 'Not-For-Profit' Health Promotion Charity

UPDATES:

COVID – 19

As many of you will be aware, the COVID-19 Virus has had an unprecedented effect on the lives of us all. Many Fundraising, and in particular cycling events, have either already been cancelled, or might soon be forced to follow suit. Therefore, given the precautions we must now all diligently exercise in order to safeguard our community, we too are reconsidering whether or not this epic cycling event can take place in 2020. Thus far, the date has been pushed back to July, however, any later than this would create other complications in circumnavigating our vast continent. We will be making more announcements as things continue to develop. Thank you for your ongoing support and understanding during these most difficult of times…

Please stay healthy & safe, and remember that we will all get through this together…

Steven Shah

20, 000kms Around Australia in Under 200 Days
MPN Research Fundraiser
– Cycling For A Cure –

Every person that is diagnosed with an MPN, (irrespective of which one), might also experience a sense of becoming overwhelmed by that news, which is in many cases a “Life changing event”.

All of us have our own stories as to where we were in our lives upon diagnosis, and while this ‘Fundraising Effort’ is intended to raise funds for MPN Research specifically… It could also very easily have been for mental health, as many of us are tested by depression and anxiety as a direct result of our diagnosis, because we begin to realise our lives are changed.

In Australia, in particular, we are lagging behind much of the rest of the western world when it comes to all things MPN. Hence, it is with some hope that this little website might help MPN patients to help themselves, by becoming better patient advocates, and by edifying one another, and in the process, (dare I say it), some of our medical practitioners too. For there is still no doubt that very much needs to be unmasked in relation to the study and research of Myeloproliferative Neoplasms, (MPNs).

At the very least, it is one of our fervent hopes and desires that this Australian MPN FORUM might aid in assisting those seeking to find a way to cut through the jargon, and learn to live more comfortably with their MPNs.

Mates First Fundraiser…

It is envisaged that the MATES Fundraiser pages, (with the help of our MPN Global community), will over time create many fundraiser opportunities to specifically fund research into MPNs.

Our first epic Fundraiser is set up in two (2) parts essentially: 

Pt1. – Fund the Ride 

&

Pt2. Donate to MPN Research w/ Peter MAC Cancer Foundation

Part 1.

  • RED BUTTON: Donations to the Ride
 
Will help us to fund the expense of the actual ride. However, all general expenses such as food & fuel etc, will be met by us as our everyday normal operating costs.
 
Travelling over 20,000kms will require us to have some type of our own mobile support vehicle, and we are working towards funding a motorhome/campervan of some description. Those required funds are essential to our covering much of the expenditure to undertake our circumnavigation of Australia by cycle, (and hopefully creating a Guinness World Record in the process).
 
The Red Button above links directly to our GoFundMe page where all such donations and contributions are most gratefully welcomed and received.
The newly formed MPN-MATE RESEARCH FOUNDATION
will happily receipt ALL donations of $2 or more to help us fund the ‘THE RIDE’ itself, as those received donations are to help meet ‘The Ride’s major expense of providing the the ‘SUPPORT VEHICLE’ required in order to make this epic cycling attempt a reality…
 
Part 2.
 
  • BLUE BUTTON: Donations to PETER MAC CANCER FOUNDATION

All donations to the PETER MAC Cancer Foundation, go directly to the MPN Research, (Bank account), to help fund their most important work into ultimately providing better solutions for the ever increasing numbers of people being diagnosed with an MPN, (possibly as many as 30,000 people in Australia), and many of them presently remain undiagnosed…

As will be seen from our SPONSORS page, our ambitious target is to raise circa $117,000.00

All of the funds raised via Sponsorships will go directly to our PETER MAC MPN Research, where Donors will automatically receive their PETER MAC receipts for donations of $2 or more.

(Please see our SPONSORS page for more details on available sponsorship positions).

Circa 20,000 kms in 200 days...

The Ozzie map above shows an indicative trail of the course that we intend to take around Australia. However, as we all know, there are many obstacles that might come before us. Hopefully, we will miss any cyclones that seem to enjoy visiting the tropical parts along with the monsoons, and the wicked winds that drive them…

We will also endeavour to have a ‘LIVE’ tracking system in operation, in case any of you wants to keep track of our progress over time. Six (6) months is certainly going to be “…one long ride…”

As we progress from state to territory and back through all of this country, we will also be sending out messages to the local press and tabloids that we will be passing through at an estimated date and time…

We hope to have all sorts of riders come out to share part of our cycle as we pass through their city or town. Who knows there could even be an opportunity for some of the more adventurous among you to come and join us on one of our journey’s legs… ?

During our trek, we will continue to upload pictures and videos of the journey around our incredibly diverse continent. Whenever it is possible to participate in any state or territory MPN conference that might be taking place, we will attend and answer any questions we can while also providing a short talk on how one Myelofibrosis, (MF), sufferer decided to take back control over their MPN condition…

An ‘Instagram’ account will be specifically set-up to aid in our promise to provide as much advertising and promotions to our Sponsors as we are able. To that end we will also have both a ‘Twitter’ and ‘FaceBook’ accounts. Hopefully, we will then have this ‘Record-Breaking’ attempt, as a very well tracked event. 

“Attempting to achieve this desired result for far more research being undertaken into MPNs, was/is such an obvious need, and a no-brainer almost from the moment that I learned of my diagnosis. Hopefully, through this and other future fundraising, and MPN awareness campaigns. People with an MPN into the future will not have to go through the uncertainty of not really ever knowing exactly what it is they are suffering from because the medical fraternity were unable to tell them… “

Far more importantly, hopefully we will eventually learn of superior treatment options, and of course…

A Real Cure!

MPN-MATES Cycling Around Australia Itinerary
(Final dates for departure to be advised)

Below we are providing the first draft document that will describe the length of each of the journey’s legs taken to circumnavigate our vast and diverse continent. The weather of course will continue to play a role in every leg of the journey, as will our trying to estimate the optimum timing to make the attempt , and we will most likely have to take into consideration a number of weather-related or other possible unforeseen events. Nevertheless, we will endeavour to stick to our programme, and time-table, as best we may. Please bear this in mind, as the Final Date for Departure is yet to be decided, and will be included here below, as that update occurs into the future… 

The Australian Bureau of Meteorology, (BOM), has advised that an anti-clockwise direction might be best to follow, and the best departure time most likely in mid–late winter, 2020. (As this timing would most benefit according to prevailing winds etc).

Our Itinerary will appear once it has been completed. In the interim, please enjoy our brief video below…

MPN-MATE's first Fundraiser Video...