About MPN AA
The Myeloproliferative Neoplasms Alliance Australia (MPN AA) was formed in 2015 by a small group of motivated patients who themselves had a diagnosis of MPN. The patient-led advocacy group collaborates with the Leukaemia Foundation of Australia with the common goal of achieving better outcomes for Australian MPN patients.
We aim to increase awareness and understanding of the MPNs and the plight of patients.
Unifying the Australian MPN community by sharing information and vital links to existing resources, organisations and support, will be beneficial to newly diagnosed and existing patients and their families.
MPN patient quality of life is central to everything we do. Together, we strive to advocate for access to emerging treatments as well as contribute toward research to aid in the search for a cure.
The MPN AA and the Leukaemia Foundation have collaborated to establish a dedicated fund. The fund established by donations from the MPN community and the general public will be used to support joint activities of the MPN AA and the Leukaemia Foundation. Please click here to make a donation.
MEET THE TEAM
The MPN AA is run by volunteers who are all affected by a MPN.
Diagnosed with JAK2 + Essential Thrombocythaemia (ET) at the start of 2008, my disease progressed after a few years to Polycythaemia Vera (PV). During the first five years, I received little information and felt unsupported especially whilst experiencing debilitating side effects from drug treatment. I like many have turned to the internet to seek information and support. In 2013 I felt compelled to set about making real and lasting change for MPN patients in Australia.
The Leukaemia Foundation has been supportive in assisting me with the establishment of a local support group and in establishing a dedicated MPN fund to direct funds raised toward MPN activities. In 2014, I undertook a fundraising campaign. With approximately $40,000 raised, $24,000 was donated to MPN Research in Australia, whilst the balance was deposited into the MPN fund within the Leukaemia Foundation. In early February 2015, I acted upon an email that I had received from the Leukaemia Foundation. The Australian Senate had referred the matter of ‘ The Availability of new, innovative and specialist cancer drugs in Australia’, to the Senate Community Affairs References Committee, for inquiry and report.
I headed a campaign spanning some months, to gather submissions from MPN patients, caregivers and friends. Out of a total of 205 cancer submissions, a collective effort resulted in 30+ MPN specific submissions being put forward. The 17 September 15 report acknowledged our advocacy for best treatments to be made available and raised awareness of these little known blood cancers. I am proud of this initiative as it has laid a solid foundation upon which further tangible work can be done to progress access to drug treatments through the Pharmaceutical Benefits Scheme (PBS). The committee recommended that the Australian Government initiate a comprehensive review of the system for the registration and subsidisation of medicines. The committee urged that current treatments available overseas, be expedited for listing on the PBS. So too was it noted that patients are affected by harsh side effects from dated treatments. A light was shone on the need for an improved quality of life for Australians living with a diagnosis of a Myeloproliferative Neoplasm.
Volunteering for the MPN AA by working with other like-minded patients, has already reaped benefits for the MPN community.
I was diagnosed with essential thrombocythaemia (ET) in 2008 and in 2010 my diagnosis changed to polycythaemia vera (PV). Although I had worked as a health professional for over 20 years (currently as a dietitian and previously as a nurse), I had never heard of myeloproliferative neoplasms (MPN) and an internet search showed limited information was available on MPN at that time.
I soon joined MPN-Oz and MPN-Net list serves, where others with MPN kindly shared their knowledge and experiences and answered my questions, helping me feel less alone. In 2011, I attended the Mayo Clinic conference in Phoenix, Arizona, and returned home encouraged to learn about international research that was underway searching for causes and cures for MPN. Over the last few years I have volunteered with the Leukaemia Foundation by writing articles for the Foundations' newsletter MPN News, presenting at patient conferences and advocating for people with MPN.
I have become a volunteer member of the MPN AA because I believe that as a committed group of MPN patients working in partnership with Leukaemia Foundation we can increase community awareness of MPN, raise funds for MPN research and help provide accurate and up-to-date information for people living with MPN and their families.
In mid 2013, I was diagnosed with JAK2+ ET, through routine blood tests. At that time I was not aware of any symptoms, and was otherwise fit and healthy. The diagnosis sparked an intense curiosity to find out more about these rare diseases.
I have since joined a number of online support groups, both overseas and in Australia, and have tried to resurrect my rusty knowledge of statistics and genetics to better understand research articles on the subject. I feel strongly that Australian MPN patients need access to best practice in diagnosis and treatment.
I have joined the MPNAA team to help through raising awareness and funding for research, and in assisting patients to feel less isolated with their diagnosis."
I was diagnosed with Essential Thrombocythaemia in 2003. Although I did suffer some debilitating symptoms during this time, the seriousness of living with ET became a reality when I ended up in hospital in 2013. After this, it became important to me to really understand this illness and I struggled to find a lot of Australian based information that was relevant to my situation.
The Leukaemia Foundation was fantastic and I believe that the combination of the MPN AA and the LFA are able to make a positive difference to the MPN community.
After being diagnosed with Polycythaemia Vera +JAK2 in 2015, I realised that in Australia, there was very little information available on MPNs, that there was no significant advocacy for MPN patients, and that access to treatments was limited.
I strongly believe that as an active and committed group, the MPN AA can make a difference. I believe we can best achieve this through our partnership with the Leukaemia Foundation."
I was diagnosed with a Myeloproliferative disorder in mid-1998, following investigations into an Ischaemic toe. It took a further 6 months to decide which MPN I had - Polycythaemia (Rubra) Vera. I had never heard of Myeloproliferative disorders - I even had to ask the oncologist how that was spelt. Like many, I took to the search engines and quickly realised that there was little Australian based information.
I set out to rectify this situation by establishing the MPD-Oz email list in 1998 which currently has 162 subscribers. I have had a long and productive association with the Leukaemia Foundation since 2000 with many MPD-Oz list members contributing to their first edition booklet on Myeloproliferative disorders produced by the Leukaemia Foundation.
Based on this long association with LF I have become a MPN AA volunteer to promote wider understanding of these rare diseases, to support patients and carers and to find treatment that will one day cure these blood cancers.
The MPN Alliance Australia recognises the efforts of past members. This website is a product of many. The members are thanked for their service.
THANK YOU TO OUR PARTNERS