$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 and will generate important preliminary data that helps explain molecular events that drive the transformation from MPN to AML. Ultimately, uncovering molecular targets will inform the development of targeted therapeutic approaches for treatment of transformed MPN, a highly chemo-refractory disease associated with extremely poor prognosis in patients.

On behalf of Dr Lane and the MPN AA, sincere thanks to all the donors who have made possible this valuable contribution to MPN research. The cheque for $35,000 is a result of various fundraising activities since the inception of the MPN Fund in 2014 and the first online MPN Art Exhibition in 2017.

Lara has announced this was her last official duty with MPN AA. She has said “I would like to take this opportunity to thank each and every donor, supporter and the people that I have worked with over the last seven years:-  MPN advocates worldwide, MPN AA colleagues past and present, Leukaemia Foundation, MPN Research Foundation, University of Queensland Diamantina Institute, MPN Advocacy & Education International, haematologists, friends and family members, for your support in believing in the idea of establishing the MPN Fund and MPN Alliance Australia to benefit the MPN community. I am proud of the platform that has been created to increase awareness, the useful resources available on the MPN AA website and importantly the valuable contribution to MPN research.”

We wholeheartedly wish Lara all the best in her future endeavours, including her wonderful painting. We salute Lara for her determination and for all the hours of work she spent in establishing MPN AA, as well as her fundraising efforts. She leaves a lasting legacy.

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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 advice – the website has been rewritten to make it easy for carers to find the information they need. Carer Gateway has lots of information for carers, including what payments you can get; how you can take a break; and help and advice on your role, managing day to day, and planning for the future
  • provides free counselling services – you can talk with a professional counsellor if you are feeling stressed or if you need advice. You can arrange to talk with a counsellor over the phone or in person.
  • lets you connect with other carers through an online forum – you can join the carer forum to be part of an online community and get support and advice from other carers in your situation
  • provides free online coaching and skills courses to help you in your role – you can work through interactive online coaching sessions or courses at your own pace. You can find a range of topics to help you in your caring role

The Minister for Family and Social Services, Senator the Hon Anne Ruston also recently announced the development of a new regional network of Carer Gateway service providers who will start services from April 2020.

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Leukaemia Foundation shines spotlight on MPN Awareness Day

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

 

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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 in our End of financial Year fundraiser, and topped this up with previously donated funds to support this worthwhile research. We are so happy that this MPN research is being carried out in Australia, and are very thankful to the researchers.

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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.

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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 in living with an MPN.  He and Esther met with many Australian and New Zealand MPN patients and some haematologists. Andrew and Esther have prepared a video about two of those patients’ experiences with advocacy,  MPN AA’s Nathalie Cook and Ken Young.  The video discusses in particular the interferon story and all the effort involved in listing Pegasys, a pegylated-interferon, which is a longer longer-acting formulation of Interferon alpha, onto the Australian Pharmaceutical Benefits Scheme.

The video of their interview is available HERE.

 

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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 cancer care.
See The Conversation – every cancer patient should be prescribed exercise medicine

Read more

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‘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.

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‘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 jump in an ice-bath, coloured red for the occasion, and face down your fears just as these courageous people do every day of their lives. It’s more than just ice, of course, it’s a metaphor for life and of learning how to be comfortable with being uncomfortable.

So come on down to Elwood Sailing Club and join certified Wim Hof Method Instructor Asher Packman, who is on his own journey with blood cancer, as he takes you through a technique that involves breathing, meditation and a life-affirming dip in the ice.

These three elements combine to put you back in touch with your own true nature, alkalising and super-charging your body to bring about tremendous benefits to the immune, nervous and lymphatic systems.

The morning ends with some amazing treats from Raw Love Superfoods.

All proceeds from the event will go to MPN Alliance Australia. The MPNAA and the Leukaemia Foundation have collaborated to establish a dedicated fund to which your money will be donated.

For further information or to book tickets, please click here.

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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. We might even branch out to the stunning outdoor setting of the National Library’s café when the weather warms up. Canberra is such a beautiful city and it really is a delight to be in such exquisite surroundings.

  

For our first two get-togethers we have had initially 8, then 10 attendees, and we have the three main types of MPN represented: 2 myelofibrosis, 3 polycythaemia vera and 2 essential thrombocythaemia.  Our other attendees have been family members which has been much appreciated.

I guess it’s a cliché but we have all found it so helpful to meet other MPN patients face to face and talk about our issues and concerns. We really understand each other as we share our stories, our diagnoses, our experiences with various medications, our hopes for a cure, and of course our ups and downs living with an MPN. One member has even had a bone marrow transplant more than 25 years ago, and is ‘alive and well and living in Weston Creek’ so it is very encouraging to hear his experiences and see him in good health.

I should reassure you that we try not to talk about the political scene here in Canberra, tempting as it is with the latest political dramas! Rather these chats have been very companionable and informal. We have agreed to see how we go meeting monthly and we would love you to join us if you have an MPN or are a family member or carer for someone with an MPN.

For details of the next get-together, keep an eye on this website under ‘Events’ and we will also advertise on our MPN Alliance Australia facebook page, Ken Young’s MPD-oz Email Support Group (mpd-oz@mpd-oz.org) and Josie Muller’s MPN Australia & NZ Myeloproliferative Neoplasm Support Community facebook page.

Jenny Myers
(Polycythemia Vera -diagnosed December 2014)
MPN Alliance Australia

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