You are not alone...

Living with MPNs

Greater awareness and research is urgently needed to stop the rising number of Australians dying from blood cancer says Leukaemia Foundation (SBS 2017)

Myeloproliferative Neoplasms, (MPNs), are rare types of Blood Cancer, (WHO 2008)

WELCOME TO MPN-MATE RESEARCH FOUNDATION

Firstly, welcome to MPN-MATE. Over the coming months there will be a continuing barrage of updates and changes to this website facility, as we endeavour to bring all Australians the first dedicated MPN Patient’s FORUM website.

One such change is the fact that we are now called the MPN-MATE RESEARCH FOUNDATION, and as the ACNC Logo located above and below, indicates we are an Australian Registered ‘Not-For-Profit’ Charity for the benefit of all Australians, but particularly those who might suffer from one of the rare blood cancers known as, Myeloproliferative Neoplasms (MPNs).

Please make yourself at home, and roam around the site to see what we are passionate about, and how with the help of all of you, we hope to not only improve our understanding of all things MPN, but hopefully, also lend to the great works being endeavoured to find better MPN treatments, and ultimately… a cure! Much research is required to be conducted into Myeloproliferative Neoplasms, (MPNs), and hopefully our efforts will assist in the Australian context to achieve the same.

Above and on the right hand side there is a RED Button Link to our GIVING TO MPNs page, (and in due course an MPN patient with Myelofibrosis will cycle from Sydney to Coffs Harbour), in order to help specifically fund MPN research into rare blood cancers taking place at the Peter MaCallum Cancer Foundation

Please visit the FUNDRAISER and SPONSORS pages to learn more about these events.

Only by learning from each other, and sharing our findings do any of us ever really progress in life.

“If I have seen further than others, it is by standing upon the shoulders of giants.” (Sir Isaac Newton)

Guiding Philosophy

We are a group of MPN patients endeavouring to improve our own circumstances by advocating and working towards our common goal of increasing MPN Awareness and Fundraising to achieve our own research objectives of creating better treatments and possibly a cure for MPNs here in Australia.

As a working committee, we have all undertaken to act as ‘responsible people’ to work to the common goals of our MPN-MATE Research Foundation’s ‘Constitution’ and to abide by the governance standards and compliance controls stated within the broader meaning of that document.

Within all our endeavours we will put all our MPN brothers and sisters needs to the forefront and always strive in their best interests.

(The cover picture above reflects a little known or realised fact about our country, where over seventy percent, (70%), of our Australian continent, is actually desert-like. However, in every desert there is also an oasis where life flourishes, and we are never alone when we have each other…

MPN-MATE RESEARCH FOUNDATION

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

Disclaimer: While mpn-mate.com is happy to provide this information in good faith for the benefit of the Australian MPN community, we make no claims or representations as to its accuracy or authenticity, as always all MPN patients should only rely upon their own sources for information, and always follow the directions of their own medical team.

Anaemia

A condition in which the blood is deficient in quantity or quality of erythrocytes, (Red Blood Cells). Anaemia is usually associated with reduced levels of haemoglobin in the blood. Haemoglobin usually transports and distributes oxygen to all body tissues. However, symptoms such as fatigue, paleness of skin colour, and shortness of breath can often affect people suffering from any one of the  MPNs. Play the video alongside to learn more …

Disclaimer:

MPN-MATE.COM, is a website run by patients for patients. Whilst every care is taken to cite factual, peer-reviewed medical information concerning Myeoproliferative Neoplasms (MPNs), all persons should only rely upon their own independent enquiries, and at all times follow the advice provided by their consultant medical supervisors.

Acknowledgements:

Mpn-mate.com is most grateful to many people behind the scenes who have helped to make the Mpn-mate website and forum a reality. We also wish to thank our sister website in the UK, (MPN-Voice), for the use of some of their content and for their general assistance and support. Thank you one and all…

MPN-MATE.COM s also very grateful to be working with the support and  collaboration of one of Australia’s leading cancer research foundations: “Peter Mac is Australia’s only public hospital solely dedicated to cancer, and is the home of Australia’s largest cancer research group”.

References

Baade, P.D., Ross, D.M., Anderson, L.A., Forsyth, C., and Fritschi, L. 2019. “Changing Influence of Myeloproliferative Neoplasms in Australia, 2003-2014.” DOI: 10.1002/ajh.25407, (accepted Jan. 16, 2019)

Odenike, Olatoyosi. 2018. “How I treat blast phase of Philadelphia-negative myeloproliferative neoplasms”. Blood, (Oct. 17, 2018); DOI 10.1182/blood-2018-03-785907

WHO. “The 2008 Revision of the World Health Organisation of Myeloproliferative Neoplasms and Acute Leukaemi: rationale and important changes”. Blood, (2009), V114, pp. 937-951. (Eds.) James W. Vardiman,1 Ju¨ergen Thiele,2 Daniel A. Arber,3 Richard D. Brunning,4 Michael J. Borowitz,5 Anna Porwit,6 Nancy Lee Harris,7 Michelle M. Le Beau,8 Eva Hellstro¨m-Lindberg,9 Ayalew Tefferi,10 and Clara D. Bloomfield11. Doi:10.1182/blood-2009-03-209262, (Online Ap. 8, 2009) 

WHO. 2017. “WHO Expert Committee on Biological Standardization, sixty-seventh report.” Geneva: World Health Organization; 2017 (WHO technical report series ; no. 1004). Licence: CC BY-NC-SA 3.0 IGO