‘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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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, from the Leukaemia Foundation, Perth, assisting on the night.

The night was attended by 166 people and a total of 73 items were donated and were sold via auction, silent auction and raffle. Live music was provided by the “Soul’d Out” Band at the gorgeous venue, The Grand Ballroom, Tapleys Hill Road, Fulham Gardens.

The MPN AA would like to thank all sponsors and prize donors who enabled the night to be such a success.  A special mention goes to Australian Unity.  The MPN AA appreciates all their support.

All money raised is being used to support improved Australian MPN epidemiological research by Professor Lin Fritschi (Curtin University of Western Australia).

If you would like to read Jolanda’s full speech, please click here.

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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 MPN Interferon Initiative. MPNRF and MPN AA are both patient advocacy organizations who work on behalf of patients with myeloproliferative neoplasms, a group of rare, chronic blood cancers.

The MPNRF Interferon (IFN) Initiative is a multi-center project which will bring together internationally recognized experts in both blood and solid tumors to determine how cytokine-driven pathways affect the trajectory of the MPNs, a closely-related group of progressive blood cancers. The collaboration among this group of scientists is unprecedented and speaks to their drive to answer this question, which could have wide-ranging impact on the lives of people living with cancer.

The MPN AA’s donation is directly supporting research by Dr Steven Lane in Brisbane as part of the Interferon Initiative in partnership with MPN Research.

We would like to thank the community for the support and donations towards this important research initiative.

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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.

 

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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 could never happen, and without you, it would not have. Many patients will benefit from your achievement of successfully advocating for an affordable alternative drug therapy for MPNs.

We would also like to acknowledge others who have contributed on behalf of the MPN community over the years to make pegylated interferon available and affordable for patients in the recent and more distant past. These include Ken Young many years ago (together with the late patient advocate Ian Sweet); Lara Chapman who encouraged and assisted the MPN community with making submissions to the Senate Committee Inquiry into the Availability of New, Innovative and Specialist Cancer Drugs In Australia in 2015; a small number of very dedicated haematologists; the Leukaemia Foundation; Rare Cancers Australia; and of course all those MPN patients and advocates who made submissions to the Senate Committee Inquiry and supporting submissions to the PBAC.

“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” Margaret Mead

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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 presented on healthy eating and the microbiome for MPN Patients.

For further information, please visit the following link: http://www.news.uwa.edu.au/2018040910519/visiting-raine-professor-joins-mpn-symposium

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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 with myeloproliferative neoplasms, a group of rare, chronic blood cancers.

The MPNRF Interferon (IFN) Initiative is a multi-center project which will bring together internationally recognized experts in both blood and solid tumors to determine how cytokine-driven pathways affect the trajectory of the MPNs, a closely-related group of progressive blood cancers. The collaboration among this group of scientists is unprecedented and speaks to their drive to answer this question, which could have wide-ranging impact on the lives of people living with cancer.

About this partnership, Barbara Van Husen, President of MPNRF says “We are thrilled to have joined forces with a group outside of the United States in order to bring clarity to how Interferon works, why it works for some MPN patients but not others, and how to expand its capabilities and extend its use if possible. We have long operated under the model that collaboration among patient advocates is the only way forward to help all patients.”

MPN AA says “We are pleased to have partnered with MPNRF for the benefit of the global MPN Community. We are honored to contribute towards Australian based MPN Research and see the Interferon Initiative as a worthy cause. We know that some patients are unable to take advantage of this treatment due to side effects and others have a poor response.

“We are hopeful that this research initiative will help overcome these limitations to provide better treatment options. The MPN Alliance Australia is a small volunteer advocacy team of MPN patients. It is our aim to make a difference to the lives of all MPN patients around Australia.

“We are grateful for the donations from supporters of the MPN cause and we are delighted to be able to contribute towards this unique project. We are excited to see what the outcomes of the study may reveal.”

The funds will directly support Dr. Steven Lane, of the Royal Brisbane Hospital in Queensland, Australia. He is a collaborator of Dr. Ann Mullally of Harvard.

About The Myeloproliferative Research Foundation

The MPN Research Foundation is fully dedicated to funding research into the myeloproliferative neoplasms, a rare group of blood cancers which include polycythemia vera, essential thrombocythemia and myelofibrosis. Founded in 2000 by a group of patients, the focus is to fund high innovation research that can expand our understanding of the MPNs and get us closer to a cure.

The Foundation’s Scientific Advisory Board works with the patient-led board of directors to utilize a rigorous selection process to ensure donations are allocated to the most innovative research projects. To date, the Foundation has awarded twelve million dollars for MPN research and has initiated a patient registry – myMPN – which is a platform that allows for people with ET, PV and MF to self-report their experience of living with an MPN.

To find out more go to www.mpnrf.org
For the patient registry: www.mympn.org
Twitter: MPN_RF
Facebook: https://www.facebook.com/MPNResearch/

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