Our Mission Strategy

MPN-MATE Research Foundation

We are a group of MPN Patients and our main objective is to improve the Quality of Life (QoL) for all Australians who might be impacted via having one of the known Myeloproliferative Neoplasm rare blood cancer diseases, and to ultimately seek out better treatment options, and a cure…

By funding specifically targeted research into MPNs we hope to remove the current knowledge gap that exists in Australia. We also hope to be able to lobby the Australian medical fraternity so that more medically trained people might evolve as specialists in a field that at best is little understood, at the present moment.

MATES Patient’s FORUM is an empowering tool for patients to better inform and advocate for themselves, and even more importantly it provides a ‘Voice’ to a previously isolated group of patients who were unable to understand or discuss their illness with others.

Via the MPN-MATE.COM website, we also promote and encourage the freely given exchange of MPN information with other global providers of MPN services.

The MPN-MATE Research Foundation has initially commenced working in collaboration with the Peter MacCallum Cancer Foundation in Victoria, as a premiere cancer research institute, and the only dedicated cancer general hospital in Australia to help us unlock critical information concerning MPNs.

Naturally, we are very grateful for all the support we receive so please accept our gratitude in advance.

Mission & Strategy

Increasing awareness of Myeloproliferative Neoplasms (MPNs), within the broader Australian community is part of a suite of our overall objectives.

MPN-MATE Research Foundation also provides patient support with the only MPN Patient’s FORUM website in Australia, (MATES FORUM). MPN Patient’s Quality of Life (QoL) is central to everything we do…

MATES Patient’s FORUM tool allows many MPN patients to speak with and learn more about their MPN conditions from other MPN patients that they might otherwise never have been able to access, as many within the Australian medical fraternity suffer from a ‘Knowledge Gap’ where MPNs are concerned.

MPN-MATE Research Foundation will raise funds from various avenues and work towards continually providing better outcomes for all MPN Patients in Australia.

Into the future we hope that we will receive requests from many other MPN researchers wishing to increase both awareness and to further the MPN research currently underway in Australia.

Our initial funds were established via receiving donations from supporters of the greater Australian MPN community who want to see more specific MPN research occur into these debilitating chronic rare blood cancers known as, Myeloproliferative Neoplasms (MPNs).

We encourage Feedback from all people everywhere. Hence, if you have a suggestion we would welcome contact from you so please send us an email

MPN-MATE.COM was born out of a need to share this journey with others…

Ass. Prof. Dr Kate Burbury

MPN are rare diseases, so being diagnosed can often feel isolating. But more people are being diagnosed and are living long lives, so you are not alone and there are greater efforts from both consumers and medical professional who work in this space to make living with MPN possible.

Peter MAC Cancer Foundation 2019

 

MPN-MATE.COM is a project being developed here in Australia to aid in particular those people afflicted with an MPN, a MYELOPROLIFERATIVE NEOPLASM.

Hence, this website is essentially for MPN patients to speak with each other and share their journey with others who may have been recently diagnosed into this rather exclusive gathering. In so doing, persons afflicted begin to educate themselves, their families, and carers, about how to manage their individual MPN conditions.

Myeloproliferative Neoplasms (MPNs), are a relatively new and poorly understood phenomena and much as yet still remains ‘unknown’.

Not entirely surprising when one realises that the primary ‘Driver’ mutations thought to cause these conditions were really only discovered over the past 1.5 decades, and the medical fraternity and researchers are all endeavouring to learn more about how to manage, treat and ultimately help find a cure for these MPN conditions…

Many MPN patients have shared stories of how their GP, (and even their specialist), have told them that their MPN is not a form of blood cancer, when in fact they are mistaken. All MPNs were classified by the World Health Organisation as blood cancers because of their abnormal ability to proliferate an over-abundance of blood cell types, (WHO 2008).

Hopefully, the advent of this website, primarily for an Australian audience, will assist both patients, their families, carers, and the medical fraternity alike to become much better acquainted with what these rare blood cancers are and how best to manage them. Some estimate that there might be as many as 30,000 Australians that have one of the three more classical types of MPN…

Due to the sometimes subtle nature of having a chronic illness, (and to the ignorance that often surrounds them), Myeloproliferative Neoplasms (MPNs), might be called “Invisible Illnesses” and they are treated as a poor cousin to many other forms of blood cancer, and this in turn can isolate those that are affected from receiving the proper treatment for their MPN. In Australia, in particular, there is a vast shortage of those who might be termed an, “MPN Specialist”.

Hopefully, in time this too will change…

Understanding the burden of living with MPN is important. Along with your medical specialists and family members, advocacy groups can play an important role in the MPN community. They can work alongside clinicians and researchers to drive ideas and innovations, but they also provide an opportunity to share your stories, your ‘remedies” for symptoms, offer advocacy, education and resources – as well as provide emotional support.

Ass. Prof. Dr Kate Burbury 

MPN-MATE Advocates

Advocacy & awareness are two extremely important aspects of this website…

Every MPN afflicted person needs to be their own very best advocate and to realise that they too can live an almost completely normal life with a few relatively simple changes to their lifestyles. Those changes are not so earth-shattering, in fact, much of it is simply about out-dated dietary concepts and breaking a few bad habits…

In the Australian context, studies of the prevalence of MPNs are still in their embryonic stages. However, overseas there appears to be a significant increase in diagnosis of MPNs and for people with an MPN that means we need to learn how to better improve on our Quality of Life, (QoL), as we learn to ‘Live with our MPNs’ by better educating ourselves, (our families, carers & physicians), into understanding all the ramifications of having an MPN condition……

The three MPN patient founders of this website, (see below), believe the importance of following an anti-inflammatory diet of simple unprocessed foods, (like fruit & vegetables), coupled with consistent exercise, will naturally aid our longevity, in most instances…

However, we are all just a tad different from one another, and everyone is entitled to their own view of course…

Garry

Sydney, Australia
Post PV / MF 2017

Garry was diagnosed with Polycythaemia Rubra Vera (PV) in 2009. In 2017 Garry was reclassified as Myelofibrosis, (MF). Although concerned by this transformation, Garry maintains a positive approach, cycles weekly, and that has helped his fitness levels to stay above average…

 

Merry

Bunbury, Western Australia
Essential Thrombocythaemia (ET) 2015

Merry was diagnosed with ET in 2015. Merry is a dedicated mother in her mid 50s who still manages to work full-time, despite her MPN.

Since diagnosis, Merry has overcome a thrombotic event (cerebral venous thrombosis) as well as a nephrectomy (kidney removal) due to kidney cancer.

Merry is enormously thankful for the help and support she has received since contacting fellow MPN Mates and believes this website will prove invaluable in raising awareness and providing support to Australian’s with MPNs.

Please feel free to contact Merry via Mates Forum. 

 

Steven

Sydney, Australia
Post ET / MF 2016

Steven was diagnosed in 2016, initially with ET and later reclassified to MF. Since having started a new anti-inflammatory diet and exercise regime, Steven has witnessed a molecular reversal in his bone marrow scarring from Grade2 down to Grade1. 

Once only able to cycle around 5kms, Steven is now planning to cycle around Australia, (a distance of circa 20,000kms), as the first major fundraising effort for MPN-MATE…

Happy to chat with anyone on the MATEs FORUM at any time, best wishes…

 

There are many ways to Live with MPNs...

The first thing to realise here is that we are all on this journey together, and what lifestyle changes might work best for some might not be true for another. Hence, like most things in life, a diversity of views is encouraged and welcomed.

Our MATEs FORUM pages, will be a great place to share some of those ideas and experiences among ourselves.

So remember, what works best, is usually that which actually works best for YOU!

The mortality burden increases as age increases, both for the number of deaths due to MPN and number of deaths due to other causes… (Baade et al 2019)