$35,000 donation to Dr Steven Lane, QIMR, for MPN research

Pictured here is Dr Steven Lane, Head of Cancer Program QIMR Berghofer Medical Research Institute, receiving a donation of $35,000 from Lara Chapman and the MPN AA. The money is being used to further understand the mechanisms of how MPNs turn into leukaemia. The research is underway in Brisbane…

MPN patient support group - 29 October at PeterMac in Melbourne

NEW MPN SUPPORT GROUP - Peter MacCallum Cancer Centre, Melbourne! We are delighted to announce the PeterMac MPN team is launching an MPN Support Group on Tuesday 29 Oct from 10:00-1130am in the Wellbeing Centre, Level 1, with morning tea provided. This group plans to meet monthly. Anyone living with…

Leukaemia Foundation's 'Light the Night' - October events across Australia

What is Light The Night? Light the Night is the Leukaemia Foundation’s beautiful evening lantern walk, where Australians come together and transform the darkness into a sea of glowing light to give hope to all those impacted by blood cancer. It’s your night to walk beside those facing their…

Explore the New Carer Gateway for Australians

Explore the new Carer Gateway Carers in Australia can now find new supports and services, as well as clear advice and tips, on the new Carer Gateway website. If you care for a family member or friend, then Carer Gateway could help you. The new Carer Gateway: provides practical information and…

Leukaemia Foundation shines spotlight on MPN Awareness Day

The Leukaemia Foundation supports MPN Awareness Day (September 12).  

Call for PBAC submissions to make Jakavi available for PV patients

Novartis is proposing to the Australian Pharmaceutical Benefits Advisory Committee that Jakavi (ruxolitinib) be made available on the PBS for patients with polycythemia vera (PV). Currently Jakavi is on the PBS for patients with myelofibrosis in certain circumstances. The use of Jakavi by Novartis…

MPN AA donates $10,000 to Australian MPN research

Thanks to all our donors who made it possible for Nathalie Cook and Ken Young of MPN AA to present a cheque today for $10,000 to Dr Cavan Bennett and haematologists A/Prof Kate Burbury & Dr Sant-Rayn Pasricha of Peter Mac and WEHI to support their exciting research into PV. We raised over $7000…

New class of drugs being developed for treatment of polycythaemia vera

An update on the progress with these newly developed drugs is provided by Associate Professor David Ross, Consultant Haematologist at Royal Adelaide Hospital and Flinders Medical Centre, Adelaide ———————————————————————————— Treatment options…

Next Canberra MPN Coffee and Chat - 16 June at 10.30-12

We have a delightfully supportive and friendly group of MPN patients in the Canberra region so if you live in or around Canberra, please come and join us. There is always a great deal of news to share, experiences to recount, even sometimes blood test results to discuss! We are meeting in a lovely…

MPN AA supporting research into a new way to treat iron deficiency symptoms for PV patients

MPN AA is supporting MPN research at Melbourne's Peter MacCallum Cancer Centre and Walter & Eliza Hall Institute of Medical Research, investigating a new way to treat iron deficiency symptoms and improve quality of life for people living with polycythaemia vera (PV). 100% of all tax deductable donations…

Video presentations available from the Joyce Niblack Memorial Conference on MPNs, 2019

You can now watch the video presentations from the 11th Joyce Niblack Memorial Conference on Myeloproliferative Neoplasms , 2-3 March 2019, Scottsdale, Arizona.  The powerpoints of the presentations are also available to read online. This biennial patient conference is organised by the MPN Education…

New study: Burden of Myeloproliferative Neoplasms in Australia revealed

New research led by Cancer Council Queensland and Curtin University has investigated the patterns and trends of myeloproliferative neoplasms (MPN) for the first time in Australia. The research, published in the American Journal of Hematology, explored the impact of MPN, which affects more than 5000…

MPN Patient Information Afternoon - Sydney - 23 February 2019

MPN AA and the Leukaemia Foundation collaborated to stage this very successful MPN patient information event at Royal North Shore Hospital in Sydney, attended by 60 patients and family members. MPN AA is very grateful on behalf of MPN patients for the great job done by Greg Zotos from the Leukaemia…

Ropegintererfon Alfa 2B Approved for Marketing for Treatment of Polycythemia Vera in the EU

Ropeginterferon alfa 2b is a longer acting form of pegylated interferon. It has very recently been approved for marketing in the EU for the treatment of Polycythemia Vera under the name “Besremi”. Read the full news announcement here.

Patient Power interview with Nathalie Cook and Ken Young

Andrew and Esther Schorr from Patient Power in the USA have long been strong advocates for patient knowledge and empowerment. They recently visited Australia and New Zealand as part of their advocacy work. As Andrew has an MPN (myelofibrosis), he very much understands the issues and challenges involved…

MPN Patient Information afternoon - Sydney

SAVE THE DATE. MPN AA has been negotiating with the Leukaemia Foundation and a number of great presenters to hold an MPN Patient information afternoon in Sydney on Saturday 23 February 2019. Further details and opportunity to book a  place coming soon.

MPN Interferon Initiative Report

On the 30th November, Lara Chapman represented the MPN Alliance Australia as an invited guest, at the 2nd Annual ASH Meeting, hosted in San Diego by the MPN Research Foundation. The MPN AA would like to thank our partner organisation, MPN RF, for the invitation. We appreciate the opportunity to follow…

Benefits of exercise for MPN patients

There has been some recent media attention about the value of exercise for cancer patients.  In May 2018, Associate Professor Prue Cormie, an accredited exercise physiologist explained that 26 cancer organisations were calling for exercise to be prescribed to all cancer patients as part of routine…

'Blood Bath' for Blood Cancer Awareness Month raises $350

Many thanks to Asher Packman for holding a 'Blood Bath" for Blood Cancer Awareness Month.  Despite a very chilly day, a total of $350 was raised.  Asher has donated all proceeds to the MPN Fund and the MPN Alliance Australia.  The MPN AA would like to thank Asher for his support.

'Blood Bath' for Blood Cancer Awareness Month

Did you know around 60,000 Australians are living with a blood cancer and around 35 people are diagnosed every day? September is Blood Cancer Awareness Month (BCAM) and, as such, here's your opportunity to support those in need, their caregivers, friends and families. What better way than to…

Canberra MPN 'Coffee and Chat' group

Canberra MPN 'Coffee and Chat’ group Here in the nation’s capital, we have established a regular ‘coffee and chat’ group for MPN patients and their families or carers.  So far we have had two monthly get-togethers in a cosy lounge area of a Civic café, Xchange on London, on a Saturday morning.…

MPN Charity Dinner raises $23,505 for MPN research

Congratulations to Jolanda Visser on her outstanding success - raising $23,505 at a MPN Charity Dinner, in Adelaide,  which she organized on behalf of the MPN AA. The MPN AA are grateful for the support of the Leukaemia Foundation with Julia Clarke as the Master of Ceremonies and Kerryn Lambert,…

MPN AA donates $20,000 to MPN Interferon Initiative

The MPN Alliance Australia is proud to announce that they have donated a total of $20,000 to support the MPN Interferon Initiative. In April 2018, the MPN (Myeloproliferative Neoplasms) Research Foundation (MPNRF) and MPN Alliance Australia (MPN AA) announced a research partnership focused on the…

European Hematology Association (EHA) 2018 Update

Haematologist Professor Andrew Grigg recently attended the European Haematology Association (EHA) conference in Stockholm and has kindly allowed the MPN AA to share his summary of MPN studies presented at the conference.  Many thanks Professor Grigg! View Professor Grigg's summary here.  …

Pegasys® (pegylated interferon alfa-2A) listed on PBS

We are so proud of you Nathalie, and so thankful for your huge efforts on behalf of the MPN community in Australia. Your passion, networking and intellectual rigour have absolutely got us to a place no one thought we would ever reach. We as a community have been told so many times in the past that this…

WA MPN Symposium

Sue Taylor and Nathalie Cook from the MPN Alliance Australia, were invited, as guests of the Faculty of Health and Medical Sciences, University of Western Australia, to attend and present at the WA MPN Symposium. Sue Taylor presented on the advocacy of the MPN Alliance Australia whilst Nathalie Cook…

New research partnership

Chicago, IL and Australia The MPN (Myeloproliferative Neoplasms) Research Foundation (MPNRF) and MPN Alliance Australia (MPN AA) are proud to announce a research partnership focused on the MPN Interferon Initiative. MPNRF and MPN AA are both patient advocacy organizations who work on behalf of patients…

BREAKING NEWS: PBAC has recommended the government change the listing for Pegasys® to UNRESTRICTED ACCESS

Dear Friends, Roche phoned me today to announce the Pharmaceutical Benefits Advisory Committee (PBAC) recommended in it’s November 2017 meeting that the Government change the PBS listing for Pegasys to UNRESTRICTED ACCESS, to enable MPN patients to obtain Pegasys on the PBS (and also other blood…

MPN Horizons Conference 2017

Jolanda Visser attended and presented at the inaugural MPN Horizons Conference in Serbia in early November 2016. The conference provided an opportunity for MPN Patient Representatives and Advocates to meet, discuss the issues facing MPN patients around the world and to share best practice from local groups.

MPN Online Charity Art Exhibition raises $14,788

The MPN Online Charity Exhibition was conceived by artist Lara Chapman, with the aim of raising awareness (and funds) for a little known rare group of blood cancers called ‘Myeloproliferative Neoplasms’ (MPNs). There is no cure and very limited drug therapies. Lara’s goal was to raise funds to…

Pegasys® Update - Great News!!

Roche phoned me on 4th August to update me on the Pegasys for MPN issue. I am delighted to announce that Roche made a PBAC submission in late July, requesting UNRESTRICTED ACCESS of Pegasys on the PBS. This means that if approved, Pegasys will be available for prescription for any indictation, including…

Jolanda Visser accepts $1,000 donation to the MPN fund

The MPN AA would like to thank the Big A Boutique Op Shop from the Colonel Light Gardens Church of Christ in South Australia for the generous $1,000 donation they issued the Leukaemia Foundation’s MPN Fund. The Big A Boutique regularly donates part of their proceeds to charities and organisations…

European Haematology Association (EHA) Conference – Madrid

Haematologist Dr Cecily Forsyth recently attended the European Haematology Association (EHA) conference in Madrid and has kindly prepared a summary of the MPN studies presented at the conference, for MPN AA to share with the MPN community. Many thanks Dr Cecily! View Dr Forsyth's summary here.

Medicinal Cannabis Consumer Update

On May 18, Ken Young attended the Medicinal Cannabis Consumer Update organised by the Consumer Health Forum on behalf of the Commonwealth Department of Health and the Australian Advisory Council for the Medicinal Use of Cannabis. There has been considerable media attention to the decision by the Australian…

Queensland Coffee Cake and Chat

The Leukaemia Foundation hosted an informal coffee, cake and chat afternoon at the Jindalee Hotel on Saturday 13th May. It was well attended and provided a useful opportunity for those with an MPN to unwind and connect with others.

MPN Clinicians and Researchers meeting - Melbourne 27 April 2017

The day prior to the MPNAE&I Patient Program in Melbourne, Australian MPN clinicians and researchers met with some US counterparts to share knowledge and ideas. In the photo below, Dr Ruben Mesa speaks  about the unmet needs of MPN patients, particularly those with Myelofibrosis. He discussed the…

MPN Patient Program - 28 April 2017

The Australian MPN community was given a wonderful gift on Friday 28 April by Ann Brazeau and her team from MPN Advocacy and Education International, together with Drs Ruben Mesa, Laura Michaelis, and Raajit Rampal from the US; and Drs Cecily Forsyth, Steven Lane, Kate Burbury, David Ross, and Wendy…

Why MPN AEI came to Australia!

By Ann Brazeau, CEO, MPN Advocacy and Education International MPN Advocacy and Education International hosts several patient/caregiver educational programs per year. Although most take place in the United States, their goal to expand to other countries where MPN groups are interested in partnering…

Follow Up - Pegasys® on the PBS for MPN

Dear MPN Community, I received a letter from Professor Andrew Wilson, Chair of the PBAC, in response to my submission requesting Pegasys® (Interferon Alfa-2A) listing on the PBS for MPN. Professor Wilson stated he and his PBAC colleagues agree there is a need for interferon based therapies in…

MPN Education Foundation

I have just been lucky enough to attend the MPN Education Foundation biennial Conference at the Mayo Clinic in Scottsdale, Arizona, in a private capacity. I was one of two Australian MPN patients, accompanied by our partners. It is impossible to summarise the whole conference in a few words. The tireless…

PBAC to Consider Pegasys® on the PBS for MPN

PBAC will consider PEGASYS submissions at their meeting on 8th March 2017 Submissions to PBAC in support of having PEGASYS listed on the PBS for MPN have now closed. The MPN Alliance Australia would like to thank the MPN community for their submissions. In addition, we would like to thank the Leukaemia…

Alan Mead - Obituary

The MPN AA notes, with regret, the passing of MF-champion Alan Mead on 6th February 2017. Alan was an MPN sufferer. He was inspirational in championing the cause to raise awareness of Myelofibrosis in Australia. He set up a website in 2010 and provided a point of contact for many people suffering from…

MPN AA Update

On Monday 8 August 2016, members of the MPN AA attended a meeting with other advocates and stakeholders within the MPN Community, hosted by the Leukaemia Foundation of Australia in Brisbane. The meeting was chaired by Bill Petch, LFA CEO, assisted by Anna Williamson, Head of Research and Advocacy, Anthony…

Rare Diseases Day - Victoria

On Rare Diseases Day, 29th February 2016, 13 people with MPNs gathered in Melbourne’s CBD for lunch at the Chestnut Exchange Cafe on Little Collins Street. A wonderful day was had by all as participants chatted from late morning, enjoyed lunch together and some stayed until well into the afternoon,…

Rare Diseases Day - Queensland

On Rare Diseases day, 29 February 2016, a group of Queensland MPN patients met for lunch at Toscani’s Garden City to raise awareness for Rare Diseases Day, where ET, PV & MF were all represented. It was an animated gathering, leaving little time to eat lunch between sharing stories and experiences. For…

MPN Advocacy and Education International

We are excited that the latest MPN Advocacy and Education International newsletter has a distinctly Australian feel, featuring two patient stories of MPNAA members. One story is about Brisbane-based Lara Chapman and the second story is about Melbourne-based Ken Young. Here is the link If you…