February 2025 MPN Education Foundation patient conference videos
/in International, Living well, Medication, Patient Education, Research, Treatments/by SueEvery 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
More benefits of exercise
/in Living well, News, Patient Education/by JennyHappy 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.
- Some practical easy to implement advice from The Conversation
‘Five ways to make your daily walks even more beneficial’. - 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.
Webinar – Creating meaning in the face of blood cancer – now available
/in Living well, News/by JennyThe 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.
Webinar on ‘Fear of cancer recurrence’ now available
/in Living well, News, Patient Education/by Jenny
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.
Leukaemia Foundation’s ‘Eating Well’ booklet
/in Living well, News/by JennyThe 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.
MPN Patient Information Afternoon – Sydney – 23 February 2019
/in Australia, Living well, Patient Education, Treatments/by SueThe 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.
Benefits of exercise for MPN patients
/in Living well, News/by JennyThere 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


