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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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 cancers, such as myeloma and lymphoma.) The PBAC November meeting recommendations were published today online. (See page 13).

The next step in the process is for the PBS and Roche to negotiate and agree on a price for the Australian Government to pay Roche for Pegasys to be on the PBS for MPN. Once this agreement has been finalised, Pegasys will be listed on the PBS for MPN and patients will pay $36.00 per script instead of about $1800.00 per script. Roche were unable to give me an exact time frame for when we can expect
to have Pegasys listed on the PBS for MPN, but I was reassured Roche and the PBS are working hard towards this end. Given the time of the year, it’s likely to be a couple of months delay over the holiday period until this work can resume, and then a bit longer to wait until it is actually on the PBS.

I have been campaigning to have Pegasys on the PBS for MPN since 2011 by contacting Roche Products, my local MP, Josh Frydenberg, the Health Minister and the PBAC. In Nov 2016 I wrote a submission to Prof. Andrew Wilson, Chair of the PBAC after meeting him in Canberra at the Rare Cancers Australia forum earlier that year, and explaining to him the unmet need of MPN patients to treat their disease
with Pegasys. Following this meeting, I wrote my PBAC submission on Pegasys for MPN, (which included extensive references to published literature on Pegasys for MPN). Before logding my PBAC submission, I sought advice from several haematologists who reviewed my  submission. The Health Minister and Prof. Wilson wrote back to me in early 2017, advising my submission had been accepted for
consideration. The issue was then considered at the March, August and Nov 2017 PBAC meetings. In the meantime, I have been in contact the Roche Products throughout the process. Thank you to all who submitted consumer comments via the PBAC online portal, in support of my submission to Prof. Wilson, Chair of the PBAC. Our voices have been heard and history has been made! Hurray!!!

I wish everyone a wonderful holiday season and a very happy New Year in 2018, in which specialists in Australia will be able to prescribe Pegasys for their MPN patients via the PBS, and patients will only need to pay the PBS amount of $36.00 per script.

Kind regards,  Nathalie Cook

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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.

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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 contribute toward a research project.

Lara herself lives with a Polycythaemia Vera, one of the MPNs, and has founded a patient volunteer group known as MPN Alliance Australia, working independently under the umbrella of the Leukaemia Foundation of Australia.

The MPN Online Charity Art Exhibition was curated by Amber Creswell Bell and all works were generously donated by a group of amazing local artists, with 100% of money raised going directly to the MPN Fund of Leukaemia Foundation of Australia. Over 55 artworks were donated including one by Suzette from the MPN community – with 31 sold.

A total of $14,788.53 was raised and was used to support research into MPN.

The Online Charity Art Exhibition also served to raise awareness of MPN.  Creative Lifestyle blogger Lisa Tilse is passionate about making with our hands and hearts and promoted not only the Exhibition, but awareness of MPNs. You can follow her post here.

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