COVID-19 information for MPN patients

The MPN AA has set up a COVID-19 resources page for MPN patients.  It includes information from Australian and international MPN experts as well as information about keeping well with your MPN.

It can be accessed HERE.

 

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Leukaemia Foundation’s February 2020 MPN News now available

The Leukaemia Foundation puts out a regular MPN Newsletter for MPN patients and their families and carers.

It is a very informative read and can be accessed HERE.

And don’t forget the upcoming MPN support group in Brisbane on 14 March run by the Leukaemia Foundation.

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Videos available – Peter Mac MPN patient education seminar, Melbourne, 18 February 2020

Peter Mac has kindly made available to patients the videos from the MPN Patient Education Seminar held on 18 February 2020.

This event included the following sessions:

  • MPNs, what are they?                       Dr Kate Burbury
  • Fatigue Management                        Elizabeth Pearson, Occupational Therapist
  • Keeping well with MPNs                   Nathalie Cook, Accredited Practising Dietitian
  • How to get a good night’s sleep      Dr Oliver Holmes, Psychologist

The link to the videos is here.

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MPN updates for 2020 – video from Drs Ruben Mesa and Robyn Scherber

Drs Mesa and Scherber, haematologists from the Mays Cancer Centre in the US, discuss the latest findings from the American Society of Hematology meeting in December 2019, as well as the latest updates regarding new treatments for MPNs.  They also discuss quality of life issues for MPN patients.

WATCH VIDEO

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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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$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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