February 2025 MPN Education Foundation patient conference videos

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Every two years the MPN Education Foundation hosts a wonderful patient conference in Scottsdale Arizona, with some of the most distinguished MPN expert presenters. The conference is titled the Joyce Niblack Memorial Conference, and is hosted by the Mayo Clinic.

We are very fortunate to be able to view the conference video presentations and slides.

Here is a list of presenters and topics:

Jyoti Nangalia – MPN Molecular Biology

Rupali Bhave -Managing ET in 2025

Raajit Rampal – Managing PV in 2025

Naveen Pemmaraju – Managing ET in 2025

Ruben Mesa – Guidelines & Gaps in MPN

Jeanne Palmer – Transplants in MPN for 2025

Marina Kremyanskaya – New Drugs for PV

John Mascarenhas – New Drugs for MF

Angela Fleischman – Nutrition & Complementary Approaches for MPNs

Jean-Jacques Kiladjian – Long Term Outcomes of Interferon in MPNS

Steffen Koschmieder – Inflammation in MPNs

Susan Leclair – Learning about my Labs: An MPN Patient Guide

 

 

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More benefits of exercise

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Happy new year to MPN patients and their families.

Over a year ago, we publicised an article from Australian oncologist and author Dr Ranjana Srivastava, about the benefits of exercise.  Dr Srivastava stated that  ‘in addition to standard [cancer] treatments, exercise really is one of the best daily “pills” cancer patients can take to improve their life expectancy. Indeed, if exercise could be marketed as a pill, it would be an outright blockbuster.‘

In the last few days, the MPN AA has seen some further information and evidence about the benefits of exercise…. and because it’s a new year, we thought you might appreciate being inspired by them.

  1. Some practical easy to implement advice  from The Conversation
    ‘Five ways to make your daily walks even more beneficial’. 
  2. Recent findings from researchers at Stanford university, posted by MPN haematologist and researcher Dr Ann Mullally. It is a video interview (with transcript) from PBS News in the US.
    How exercise may be the ‘most potent medical intervention ever known’.

Caution: Haematologists and GPs still caution however to be sure to check with your GP and haematologist before launching on any new exercise program and start slowly and gently if you haven’t exercised before or not for some length of time.

Best wishes from the MPN AA for a wonderful and healthy 2025.

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Webinar – Creating meaning in the face of blood cancer – now available

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The Leukaemia Foundation have added another webinar to their suite of general webinars which focus on living well.

The latest webinar is now available and is about creating meaning in the face of blood cancer.
It is available HERE.

And don’t forget the wonderful webinar from Dr Ranjana Srivastava. Dr Srivastava is an oncologist with a wealth of experience.
She has fantastic tips for coping with a cancer diagnosis, ageing and living with blood cancer and we highly recommend it.
The webinar featuring Dr Srivastava is available  HERE.

 

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Webinar on ‘Fear of cancer recurrence’ now available

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The Leukaemia Foundation runs webinars for blood cancer patients. The latest is titled ‘Fear of cancer recurrence’, and also deals with the fear of progression, which is more relevant in the case of MPN patients.

It is presented by clinical psychologist Dr Charlotte Tottman and is very informative.
It is now available to watch HERE.

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Leukaemia Foundation’s ‘Eating Well’ booklet

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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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COVID-19 information for MPN patients

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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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MPN Patient Information Afternoon – Sydney – 23 February 2019

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MPN AA and the Leukaemia Foundation collaborated to stage this very successful MPN patient information event at Royal North Shore Hospital in Sydney, attended by 60 patients and family members.
MPN AA is very grateful on behalf of MPN patients for the great job done by Greg Zotos from the Leukaemia Foundation, and also Madeline Thompson on the day.
The presentations were great – firstly Dr Renee Eslick spoke very informatively about “Diagnosis of MPN”. Sue McConaghy, psychologist, spoke on the topic “This is Not the Life I Ordered”, providing ideas about tools we could use to help manage unwelcome and unplanned events in our lives – relevant to all of us at times! We then broke for a lovely afternoon tea, and reconvened to hear Dr Carmel Sullivan speak about how yoga could enhance our physical and mental health and quality of life. Dr Cecily Forsyth followed, and spoke on the topic “Optimal Management of MPN in Australia”, about the latest research on how MPN patients should be managed, going through the 3 main MPN subtypes in order, but acknowledging the shades of grey that exist, and the need to treat each patient as an individual.
Patients seemed to be very engaged, and there was lots of chat in the afternoon tea break, and also some constructive to and fro between patients during the question time.
Videos of the two haematology presentations by Dr Eslick and Dr Forsyth are available for viewing on our MPN Video Presentations page.
Full details of the patient information afternoon, including powerpoint presentations from all the talks are available HERE.
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Benefits of exercise for MPN patients

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There has been some recent media attention about the value of exercise for cancer patients.  In May 2018, Associate Professor Prue Cormie, an accredited exercise physiologist explained that 26 cancer organisations were calling for exercise to be prescribed to all cancer patients as part of routine cancer care.
See The Conversation – every cancer patient should be prescribed exercise medicine

Read more

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