Let’s support ground breaking MPN research by award winning researchers at the University of Western Australia!

Professor Wendy Erber and her colleagues, Dr Kathryn Fuller and Dr Henry Hui at the University of Western Australia, (pictured above) are undertaking research on a new technique to see if they can detect which MPN patients may be at risk of progressing to leukaemia or marrow fibrosis. It is hoped this may ultimately provide an alternative to the current method of utilising bone marrow biopsies for the purpose of detecting the first signs of disease escape or progression. Although only a minority of MPN patients are affected, it is not currently known who this might affect or when this will occur. By the time symptoms appear, it is generally difficult to cure. Hence a predictor of progression may assist in providing treatment earlier and possibly providing cures.

We all have small numbers of circulating stem cells (CD34+). In MPNs, the numbers are higher than those who do not have an MPN. They further increase in number with progression to leukaemia and marrow fibrosis. The team is about to commence looking at a new approach using these CD34+ cells in the blood to see if they have changes in the chromosomes that may predict progression or change in status of the MPN. They have some support from a University grant to get this started, and have formed a collaboration with MPN haematologists and scientists in Belfast to include samples from their patients.

The method the team will use is their own invention, and the one that won a Eureka Award (affectionately known as the “Oscars of Science”!) in 2018 (https://www.youtube.com/watch?v=-AvLxCLkAJc). As you will see from the Youtube video it is a flow cytometry method that enables the study thousands of cells to see if the cell-of-interest has the chromosome change that may predict progression.

We are exceedingly fortunate to have researchers of such high calibre working on MPNs in Australia. MPN AA is raising funds to support their research. Let’s get behind them!

Please support this ground-breaking MPN research in Australia this Christmas, and donate via this link.

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Better accessibility to MPN AA website information for non-English speakers

MPN Alliance Australia is pleased to advise that we have taken initiatives to improve accessibility to information on our website for patients and families in languages other than English.

We now offer treatment information on Hydroxyurea, Interferon, Anagrelide and Ruxolitinib in Arabic via our website. We are extremely fortunate to have been donated the services of an accredited Arabic translator.

Due to the substantial cost involved of translations, Arabic is the only language so far that we are able to provide.  We hope in the future to have others but need to rely on the generosity of appropriately accredited translators.

We have also uploaded a Google translate button onto the website which provides our information in all the world’s main languages. The translate button appears at the top left-hand corner of each MPN AA website page. This service is used by other respected organisations such as the Leukaemia Foundation and the Therapeutic Goods Administration.

As with the English language information on the website, translated information is general in nature, and it is the responsibility of all patients to ensure that they seek appropriate medical advice in the light of their own particular circumstances in relation to diagnosis and treatment of their MPN.  It is not intended that patients rely solely on anything they may read on this website.

 

 

 

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Easy new way for Australians to register to become a bone marrow donor

An exciting new change has occurred to the way Australians can register to become blood stem cell donors. A simple cheek swab is now all you need to do to register through the Australian Bone Marrow Donor Registry’s ‘Strength to Give’ campaign.

For a small number of  MPN patients, the only possibility of prolonging survival is through a blood stem cell transplant. Many other blood cancer patients also benefit from stem cell transplants. Please ask your family, friends and their friends to consider becoming a donor.


The Strength to Give donor recruitment campaign is targeted towards younger male donors (18 to 30 years old) as young male donors typically result in better outcomes for patients
and increases their overall chance at achieving a full recovery (unfortunately only 4% of the registry are young male donors). It is also important to attract donors from different ethnic backgrounds as patients are more likely to find a match with a donor from the same ethnic background. 

More information is available from the Strength to Give website at strengthtogive.org.au.

 

 

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$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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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 an MPN or caring for someone with an MPN is welcome, whether a Peter Mac patient or not. At the first meeting the Peter Mac MPN team will establish goals for the group and plan future events with guest speakers etc. No RSVP required. All welcome!

Further details are here:

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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 own blood cancer journey, and to remember loved ones lost.

As part of Light the Night, you can also help raise vital funds to support families living with all blood cancers and towards investment into life-changing research in fields which benefit all blood cancer patients.

This October 2019, more than 35,000 people will gather to walk at Light the Night events across the country. Carrying lanterns in symbolic colours of blue, white and gold, we will come together in an evening of reflective walk to support all Australians impacted by blood cancer.

When you register for Light the Night, you receive your special lantern to carry as darkness falls.

Lanterns are raised high in a moving ceremony to pay tribute to those facing their own blood cancer journey and to remember loved ones lost, creating a glowing sea of support. Together, the crowd then carries their lanterns along a reflective walk to Light the Night.

It’s an empowering, beautiful and supportive event that brings family and friends together to reflect, remember and show their support.

Register now to be a part of Light the Night

You’ll find everything you need to know about your local event – location, timing and all the event details.

 

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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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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 is proposed for PV patients in certain circumstances – that is, where a patient is resistant to or intolerant of hydroxycarbamide (also known as hydroxyurea or Hydrea).
The letter from Novartis to MPN AA’s Nathalie Cook and Ken Young provides further information on Novartis’ proposal. Novartis PV letter_Aug_2019

The Pharmaceutical Benefits Advisory Committee (PBAC) has opened a call for public submissions.  Submissions can be made up until 9 October 2019.

If you wish to make a submission, here is the link. https://www1.health.gov.au/internet/main/publishing.nsf/Content/PBAC_online_submission_form

 

 

 

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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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