MPN Horizons conference 2022

Reflections on the 2022 MPN Horizons meeting, Netanya, Israel
from Ken Young, MPN AA team member

The MPN Horizons meeting was held this year in Israel and online.

It was a great success with many excellent presentations.
Ken recommends in particular watch the sessions from Medical Session 3 which feature Dr Gabby Hobbs, the MPN AA’s Nathalie Cook OAM and Dr Ruben Mesa.

Here is the link to the videos from MPN Horizons Hybrid Conference 2022

Ken Young watches on whilst Nathalie Cook presents at the November 2022 MPN Horizons Conference in Netanya, Israel.

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ASH 2022 summary of highlights

Dr Ruben Mesa, an international MPN expert provides a summary of the highlights for MPN patients from the December 2022 American Society of Hematology (ASH) annual meeting.

CALR monoclonal antibody discovered!
Of particular note is the incredibly exciting news of the discovery of a CALR monoclonal antibody which has proven very successful in the laboratory. The CALR mutation is responsible for roughly 30% of ET and MF cases.
Patient clinical trials are expected to commence in the upcoming year. A measure of the importance of this breakthrough is that the research was featured in a plenary session at the conference.
Here is a link to a video from Ann Mullaly, MPN specialist and scientist from the US,  explaining in more detail how the CALR mutation is being targeted. (courtesy of MPN Hub).

Secondly, the video below from Ruben Mesa provides an overview of this and other promising developments from ASH.
Anne Brazeau, the founder and CEO of MPN Education and Advocacy International has kindly made available this video to the MPNAA.



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Interferons in MPNs: a conversation with an MPN specialist

Anne Brazeau, the founder and CEO of MPN Education and Advocacy International has kindly made available an excellent wide ranging video about interferon use in MPNs.

  • The video showcases a presentation about interferons by Gabby Hobbs, MPN specialist and Clinical Director of Leukemia Service at Massachusetts General Hospital as well as being an Assistant Professor at Harvard Medical School.
  • Dr Hobbs discusses issues that haematologists take into account when considering interferon use in pregnancy. (35 minutes into the video).
  • Dr Hobbs also responds to a range of questions from MPN patients about interferon.

Note that while the video refers often to Besremi which is a longer acting pegylated interferon available in the USA, Europe, and some other countries, Pegasys is also a long acting interferon and Australians are extremely fortunate that it is available on Australia’s Pharmaceutical Benefits Scheme (PBS).

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Leukaemia Foundation – survey of blood cancer in Australia 2022

The Leukaemia Foundation launched the National Strategic Action Plan for Blood Cancer in 2020. Its overarching principle is that ‘every Australian with a blood cancer should have equitable access to the best information, treatment and care wherever they live and whatever their background.’

As part of this plan, the Leukaemia Foundation is working towards a goal of zero lives lost to blood cancer by 2035.

To help get there, they need your knowledge and around 20 minutes of your time, to complete this survey.

All responses are anonymous.

Click HERE to begin the survey and be a part of change for the better to help people living with a blood cancer.

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September is blood cancer awareness month

September is blood cancer awareness month and an ideal time to reflect on living your best life with an MPN!

The SIMM study (Survey of integrative medicine in myeloproliferative neoplasms) found ‘an overall pattern of lower symptom burden, fatigue, depression, and higher quality of life were revealed with integrative medicine utilization’.  Integrative medicine refers to such things as yoga, aerobic activity, strength training, meditation, massages, support groups, improved nutrition etc.

To find out more about living well, we recommend revisiting this excellent webinar, organised by the Leukaemia Foundation, which features patient stories as well as outstanding presentations by:

  • clinical haematologist Cecily Forsyth who has a special interest in MPNs (commencing at 12 minutes into the webinar),
  • health psychologist Jane Fletcher whose perspective and sensible suggestions are incredibly encouraging and motivating (at 51 minutes), and
  • physiotherapist Julie Allen, herself a lymphoma survivor who provides a wealth of knowledge about how to manage fatigue and the physical impacts of blood cancer (at 1hr 39 minutes).

It is a long webinar but it is extremely informative, inspiring and we can’t recommend it highly enough.  It is available HERE.

And of course our own LIVING WELL pages contain a wealth of information for MPN patients about nutrition, meditation, maintaining muscle mass etc.


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Leukaemia Foundation’s ‘Eating Well’ booklet

The MPN AA is pleased to share news of the publication of the latest booklet on healthy eating from the Leukaemia Foundation.

‘Eating Well – a guide for patients and their support people’, was updated in collaboration with Nathalie Cook OAM, Accredited Practising Dietitian.

Nathalie has a special interest in applying her knowledge and skills of medical nutrition therapy to help people living with blood cancer and understand the link between nutrition, disease management and wellness.

The booklet contains the latest evidence based information on healthy eating and we commend it to you.

For more information about what you can do to stay well living with an MPN, we also recommend our Living Well pages.


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MPN AA Fellowship: Engineering and Pre-Clinical Validation of CALR+ directed CAR-T cells

Dr Chloe Thompson-Peach (R) accepting the cheque from the MPN AA’s Jolanda Visser

MPN AA is thrilled to announce the grant of $30,000 for an MPN Alliance Australia Fellowship titled Engineering and Pre-Clinical Validation of CALR+ directed CAR-T cells.  The grant has been made to an early career researcher from the South Australian Health and Medical Research Institute (SAHMRI) and the University of Adelaide, Dr Chloe Thompson-Peach. Chloe has previously been part of the team under Dr Daniel Thomas researching MPNs in Adelaide at SAHMRI (see separate story).  The fellowship will last for a year, and we will update you during that time.

The grant has been made possible by a generous donation of funds from a Sydney MPN patient, Sarah Gardner, following her recent fund raiser.
We are extremely grateful to Sarah for making the Fellowship grant possible and to the Leukaemia Foundation for facilitating provision of the grant. For Chloe, it enables her to pursue her research passion which has the potential to improve lives of MPN patients into the future.

Sarah Gardner. Sarah’s fund raising efforts have made this MPN Fellowship possible

Research aims for the project – Dr Chloe Thompson-Peach

Myelofibrosis is an insidious condition of the bone marrow, which disrupts the normal production of blood cells. It is characterised by painful inflammation, low blood counts and fibrous tissue building up in the bone marrow. In some patients, myelofibrosis can also develop into acute leukaemia over time. The lack of effective therapeutic options for these cancers has led us to the development of a new immune treatment for these individuals. We have developed a novel immune treatment, a biological therapy, that is a monoclonal antibody directed against the mutant CALR gene, which the second most common cause of myelofibrosis or essential thrombocythemia. We have shown this to be effective in cell lines and patient cells harbouring pathogenic CALR mutations in the laboratory. Additionally, our treatment has also been shown to have no effect on cell lines and primary cells that do not carry mutations within the CALR gene, suggesting it is truly selective, which means it will not have side effects.

In this fellowship, I propose to make and test a specific “CAR” T cell for these patients, a chimeric antigen receptor T cell, using the knowledge we have gained from our antibody therapy. CAR T cells involves removing the good white cells from a patient’s blood and then inserting the CAR gene into these T cells in the lab. These cells are then reprogrammed to target the mutated CALR protein on the surface of the cancer cells. These cells will initially be tested in mouse models of CALR driven myelofibrosis to determine if the CALR specific CAR T cells are able to seek out and destroy cells carrying the pathogenic CALR mutation. I am hopeful that by combining antibody therapy, interferon therapy and specifically designed CAR T cell we may move towards demonstration of long-term remission or cure in patients with myelofibrosis.

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Podcast – Nathalie Cook’s Pegasys story

The Leukaemia Foundation has just launched Season 2 of their ‘Talking Blood Cancer’ podcast series.

We are delighted to let you know that the first podcast features the MPNAA’s own Nathalie Cook. She shares her own MPN story and her success with using Pegasys (pegylated interferon) for controlling her blood counts.

Nathalie played a pivotal role in having Pegasys listed onto the Pharmaceutical Benefits Scheme here in Australia. It has been available to patients on the PBS since 2018.

You can listen here to Nathalie’s Pegasys story



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Leukaemia Foundation’s July MPN newsletter

The Leukaemia Foundation has released its latest newsletter for MPN patients and it’s an excellent read.
There is so much happening in the MPN space in Australia.
Individual links to each story in the July newsletter are provided below.

1.  A tool predicting the potential progression of MPNs is something under development from Professor Wendy Erber, a world leading diagnostic haematologist and MPN specialist, and her team of dedicated researchers.

2.   An antibody for myelofibrosis – “that’s a true discovery”
A new monoclonal antibody discovered by Adelaide researchers could become the world’s first effective treatment for primary myelofibrosis.

3.   Expert interview with Dr Cameron Curley on transplantation and CAR-T therapy.

4.  Patient stories 

–  Living with PV has become “a normal way of life” for Debbie

–  Charlie’s blood cancer went undiagnosed for a decade

5.    Clinical trial comparing allogeneic stem cell transplants vs best available non-transplant therapies for myelofibrosis (MF).
Associate Professor Nada Hamad is the Australian lead on this international trial which will compare best available non-transplant therapies with stem cell transplant for MF patients.

6.    Optimal care pathways being developed for blood cancer patients.

7.   WEBINAR: Exploring real life with blood cancer: The mind and body experience

This is a brilliant webinar, packed full of valuable advice featuring:
–  haematologist Dr Cecily Forsyth
–  psychologist Jane Fletcher
–  physiotherapist Julie Allen

8.   PODCAST: Talking Blood Cancer podcast series from the Leukaemia Foundation has been a great success and is filling a need for people living with blood cancer.

9.   More MPN stories from this and earlier newsletters are available

10.  Need support?
The Leukaemia Foundation encourages you to find out about the different ways they can help
– by visiting their  website or
– by calling 1800 620 420 to speak with a Blood Cancer Support Coordinator.


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2022 update on evolving therapy in MPNs – Dr Ruben Mesa

MPN specialist haematologist Dr Ruben Mesa has provided an extensive video update on evolving therapy in MPNs. It’s a very comprehensive overview of current US guidelines and emerging therapies.
For patients with myelofibrosis (MF), the discussion on MF therapies starts at 27.42 minutes into the video.

The MPN AA believes that this is such a promising time for MPN patients. There are a huge number of clinical trials occurring all round the world for MPN patients and many early results are encouraging.
While some of the therapies discussed by Dr Mesa are not yet approved in Australia, some may already be accessible here via clinical trials.

If you think you might be eligible for one of these clinical trials, your haematologist can provide you with more information.

Dr Mesa’s video is available HERE with thanks to MPN Education Foundation.




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