Cycling For A Cure Rare Blood Cancers - MPN-MATE.C
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WWW.MPN-MATE.COM (in Collaboration and Supported by the Peter MaCallum Cancer Foundation)
MPN-MATE.COM is a patient's FORUM website that was recently launched for Australians afflicted by these rare types of blood cancer, known as Myeloproliferative Neoplasms, (MPNs).
We are now an Australian Registered 'Not For Profit' Health Promotion Charity, and all donations of $2.00 or more are tax deductible.
Our purpose is Three-fold:
1. To raise funds specifically for MPN Research in collaboration with the PETER MAC Cancer Foundation in Victoria, as our beneficiary to find better treatment regimes & hopefully a cure...
2. To raise much greater awareness of MPNs within our Australian community & the medical fraternity, as we urgently need more dedicated MPN Specialists
3. To provide MPN patients, their families, friends and carers a FORUM where they can gain support during their illness and discuss their conditions with greater empathy...
MPN-MATE Rider'S Jerseys now available – https://www.mpn-mate.com/mates-shop/
MPNs, (Myeloproliferative Neoplasms), are rare types of Blood Cancer that often go undiagnosed for a great many years in Australia. A large part of the reason why is because the 'Driver' mutations that cause MPNs have only recently become known within the past 1.5 decades.
I will be 61 yo this May, and I was diagnosed with Myelofibrosis almost four years ago now. However, had my bloods been properly assayed much earlier, (say 10-15 years), perhaps it might have been more beneficial to my longevity. Nevertheless, and to continue; at first, I was quite overwhelmed and extremely depressed, because I had recently achieved my first university degree, (aged 57), and I was two (2) days away from being posted to my first o/s position in SE Asia.
Such great anticipation was followed by equal measures of disappointment...
After about a year of trying toxic cocktails care of a variety of drugs to manage my MPN condition, I finally began to have some 'quality of life' return through a special drug known as Jakafi, (Ruxolitinib). Then in turn, I started trying to improve my overall health through taking up a new anti-inflammatory diet, (w/ Intermittent fasting), and a consistent exercise regime that involved me cycling ever longer distances. I can laugh now at how I really couldn't ride 5kms, when I started, and just last week my average weekly distance for the month of March was 311kms pw.
More importantly, my bone marrow scarring has seemingly seen a molecular reversal, reducing from Grade2 down to Grade1. In my mind, this is due to a change in my mental and emotional disposition, and my desire to take action over my debilitating condition. Naturally, I thought it would be a wonderful thing too, if I could share this information with many other MPN people in Australia, and abroad, as they might also benefit through this finding...
However, there is much more to this story, and that revolves around the fact that so little is known about these MPN rare blood cancers in Australia. Sadly, it appears that our medical fraternity is having to play 'catch-up' because as economies of scale go, Australia is a tiny population, and next to no research at all is being specifically undertaken here on Australian shores, and there are possibly as many as 30,000 Australian people suffering from one of the three (3) classic MPN conditions, (and many remain as undiagnosed).
With all of this in mind, I started thinking about ideas for a Fundraiser to raise around $100,000 dollars to specifically fund Australian MPN rare blood cancer research. In the hope of creating not only greater MPN awareness, but ultimately superior treatment resources, and hopefully a better cure than that which is currently available.
Allogenic Stem Cell Transplants, (ASCT), has a circa 50% chance of success, and that still depends upon a great many variables being just so... Perhaps they should have called it the 'Goldilocks Cure' because in order for it to be truly successful, everything needs to be 'just right'.
The map of Australia below is an indicative representation of the path I intend to cycle, and it is approximately 20,000kms, and I hope to achieve it inside of 200 days...
In order to achieve this however, many things here will also need to be 'Just Right' because undertaking this mammoth effort will require a certain amount of funding just to cover the expenses of the ride itself.
Hence, we estimate that we will need to raise around 30,000 dollars to fund the ride, and hopefully, in the process set a new Guinness World Record...
Obviously there will still be the normal everyday expenses, however, the funds raised will aid us enormously and especially in helping to provide the required support vehicle, (Motorhome/Campervan), as there are many places around Australia where accommodation might prove challenging too...
All donations of $2.00 or more are now tax deductible...
MPN-MATE RESEARCH FOUNDATION was registered in early 2020, and we have DGR Tax Status, so that all gifts can be recorded as taxable assets, where applicable under the regulations of the ATO.
All Donations to Peter MAC Cancer Foundation's MPN Research Fund will be directly receipted through Peter MAC.
As we cycle around Australia, in each state we will endeavour to attend any MPN seminars, and contribute to those talks, in order to help build even greater MPN awareness throughout all of our great country...
The 'RIDE' Donations:
To Donate Directly to Fund the 'RIDE' please use the RED button above, naturally we will still have to self-fund all the normal expenses as we make our way cycling around Australia...
SPONSORSHIPS:
To arrange a Sponsorship, where "ALL SPONSORSHIP FUNDS GO DIRECTLY TO THE PETER MAC MPN RESEARCH", please contact us directly by email:
sponsorships@mpn-mate.com
Please visit the main website to see what each type of Sponsorship will offer our sponsors...
https://www.mpn-mate.com/sponsors/
We have also recently started marketing our special 'Supporters Wristbands' and MPN MATE 'Ride-Along-Jerseys' available from MATES SHOP– https://www.mpn-mate.com/mates-shop/
...so please feel free to support our efforts by obtaining one or more for family and friends...
Thank you ALL so very much for your support...
Greater awareness and research is urgently needed to stop the rising number of Australians dying from blood cancer says Leukaemia Foundation (SBS 2017)
MPN-MATE.COM is a patient's FORUM website that was recently launched for Australians afflicted by these rare types of blood cancer, known as Myeloproliferative Neoplasms, (MPNs).
We are now an Australian Registered 'Not For Profit' Health Promotion Charity, and all donations of $2.00 or more are tax deductible.
Our purpose is Three-fold:
1. To raise funds specifically for MPN Research in collaboration with the PETER MAC Cancer Foundation in Victoria, as our beneficiary to find better treatment regimes & hopefully a cure...
2. To raise much greater awareness of MPNs within our Australian community & the medical fraternity, as we urgently need more dedicated MPN Specialists
3. To provide MPN patients, their families, friends and carers a FORUM where they can gain support during their illness and discuss their conditions with greater empathy...
MPN-MATE Rider'S Jerseys now available – https://www.mpn-mate.com/mates-shop/MPNs, (Myeloproliferative Neoplasms), are rare types of Blood Cancer that often go undiagnosed for a great many years in Australia. A large part of the reason why is because the 'Driver' mutations that cause MPNs have only recently become known within the past 1.5 decades.
I will be 61 yo this May, and I was diagnosed with Myelofibrosis almost four years ago now. However, had my bloods been properly assayed much earlier, (say 10-15 years), perhaps it might have been more beneficial to my longevity. Nevertheless, and to continue; at first, I was quite overwhelmed and extremely depressed, because I had recently achieved my first university degree, (aged 57), and I was two (2) days away from being posted to my first o/s position in SE Asia.
Such great anticipation was followed by equal measures of disappointment...
After about a year of trying toxic cocktails care of a variety of drugs to manage my MPN condition, I finally began to have some 'quality of life' return through a special drug known as Jakafi, (Ruxolitinib). Then in turn, I started trying to improve my overall health through taking up a new anti-inflammatory diet, (w/ Intermittent fasting), and a consistent exercise regime that involved me cycling ever longer distances. I can laugh now at how I really couldn't ride 5kms, when I started, and just last week my average weekly distance for the month of March was 311kms pw.
More importantly, my bone marrow scarring has seemingly seen a molecular reversal, reducing from Grade2 down to Grade1. In my mind, this is due to a change in my mental and emotional disposition, and my desire to take action over my debilitating condition. Naturally, I thought it would be a wonderful thing too, if I could share this information with many other MPN people in Australia, and abroad, as they might also benefit through this finding...
However, there is much more to this story, and that revolves around the fact that so little is known about these MPN rare blood cancers in Australia. Sadly, it appears that our medical fraternity is having to play 'catch-up' because as economies of scale go, Australia is a tiny population, and next to no research at all is being specifically undertaken here on Australian shores, and there are possibly as many as 30,000 Australian people suffering from one of the three (3) classic MPN conditions, (and many remain as undiagnosed).
With all of this in mind, I started thinking about ideas for a Fundraiser to raise around $100,000 dollars to specifically fund Australian MPN rare blood cancer research. In the hope of creating not only greater MPN awareness, but ultimately superior treatment resources, and hopefully a better cure than that which is currently available.
Allogenic Stem Cell Transplants, (ASCT), has a circa 50% chance of success, and that still depends upon a great many variables being just so... Perhaps they should have called it the 'Goldilocks Cure' because in order for it to be truly successful, everything needs to be 'just right'.
The map of Australia below is an indicative representation of the path I intend to cycle, and it is approximately 20,000kms, and I hope to achieve it inside of 200 days...
In order to achieve this however, many things here will also need to be 'Just Right' because undertaking this mammoth effort will require a certain amount of funding just to cover the expenses of the ride itself.
Hence, we estimate that we will need to raise around 30,000 dollars to fund the ride, and hopefully, in the process set a new Guinness World Record...
Obviously there will still be the normal everyday expenses, however, the funds raised will aid us enormously and especially in helping to provide the required support vehicle, (Motorhome/Campervan), as there are many places around Australia where accommodation might prove challenging too...
All donations of $2.00 or more are now tax deductible...
MPN-MATE RESEARCH FOUNDATION was registered in early 2020, and we have DGR Tax Status, so that all gifts can be recorded as taxable assets, where applicable under the regulations of the ATO.
All Donations to Peter MAC Cancer Foundation's MPN Research Fund will be directly receipted through Peter MAC.
As we cycle around Australia, in each state we will endeavour to attend any MPN seminars, and contribute to those talks, in order to help build even greater MPN awareness throughout all of our great country...
The 'RIDE' Donations:
To Donate Directly to Fund the 'RIDE' please use the RED button above, naturally we will still have to self-fund all the normal expenses as we make our way cycling around Australia...
SPONSORSHIPS:
To arrange a Sponsorship, where "ALL SPONSORSHIP FUNDS GO DIRECTLY TO THE PETER MAC MPN RESEARCH", please contact us directly by email:
sponsorships@mpn-mate.com
Please visit the main website to see what each type of Sponsorship will offer our sponsors...
https://www.mpn-mate.com/sponsors/
We have also recently started marketing our special 'Supporters Wristbands' and MPN MATE 'Ride-Along-Jerseys' available from MATES SHOP– https://www.mpn-mate.com/mates-shop/
...so please feel free to support our efforts by obtaining one or more for family and friends...
Thank you ALL so very much for your support...
Greater awareness and research is urgently needed to stop the rising number of Australians dying from blood cancer says Leukaemia Foundation (SBS 2017)
Organizer
Mpn Mate
Organizer
Haymarket NSW
