MPNRF Blog

There for you, now and after Covid-19

Over a week ago, the U.S. was rocked by the realization that the novel Covid-19 virus was spreading throughout the country. Based in Illinois, the staff at MPNRF have been sheltering in place since approximately March 16th, learning to adapt to this new reality, balancing home and work life from sharing Wifi with other workers in the home to incorporating homeschooling of young children into our workday. Like us, others in the nation quickly had to adjust their lives and re-evaluate their safety. That obviously includes those living with chronic blood cancers such as Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis. Providing accurate and timely information from trusted sources has been at the top of our priority list since this began. We have been cataloging all the resources we could find on this page here. We are also hoping to host a virtual support group meeting in the coming weeks. If you would be interested please email us to let us know.  [...]

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End of Year 2019

December 30, 2019 [...]

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ASH 2019 Highlights

The American Society of Hematology is always a mad dash, a chaotic rush of activity, all focused on blood. MPNRF goes each year to hear the latest and greatest from researchers and companies focused on PV, ET, and MF, both basic science and results of clinical trials. We also use this opportunity to connect with clinicians who treat patients globally, providing our free materials for them to hand out at their clinic and letting them know about initiatives like the Stem Cell Transplant Timing Tool and our participation in the MPN Advocates Network.  [...]

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Strategies for Charitable Giving this Holiday Season

Strategies for Charitable Giving this Holiday Season
Three ways to support your favorite charities this holiday season that fit into a smart tax-planning strategy. [...]

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How to Support Someone Diagnosed with an MPN

Learning that a loved one, friend or colleague has recently been diagnosed with an MPN may leave you at a loss for what to do or say. You may feel confused. Should you act as though nothing is wrong? Maybe you should tell them about your great aunt who had an MPN. Follow this advice from MPN patients about what you can do that’s meaningful to them: [...]

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Mental Health and Myeloproliferative Neoplasms

October 10th is Mental Health Awareness Day. What does that have to do with myeloproliferative neoplasms? More than you think. In multiple surveys, people living with an MPN (Polycythemia Vera, Essential Thrombocythemia or Myelofibrosis) have reported a higher rate of anxiety or depression than the general population. A recent study from Denmark coroborated this. Looking at 2,209 people with an MPN who completed the Hospital Anxiety and Depression Scale, the prevalence of anxiety, depression, and both was 21%, 12%, and 8%, respectively. But this has been noted before including by the Landmark Study and in a survey jointly conducted by the research and advocate communities.  [...]

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Bringing the voice of MPN to the FDA

On Monday, September 16th, twelve courageous people living with Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis took the stage in Bethesda, MD at the Externally-Led Patient-Focused Drug Development Meeting on Myeloproliferative Neoplasms. They discussed how health events and living with chronic cancer continues to disrupt their lives, their symptom burden, and what strategies they use for managing them as well as their experiences with various medications and clinical trials. But most importantly, each patient spoke about their hopes for the future as it pertains to drug development. YOU have a chance to weigh in as well. For the next 30 days, we will be collecting YOUR feedback on what issues you are living with, what benefits you would like to experience with further drug development. Just send an email with your name and diagnosis to communications@mpnrf.org (we will not share your name or email).  [...]

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Are Myeloproliferative Neoplasms (MPNs) Cancer?

Does a Myeloproliferative Neoplasm (MPN) diagnosis mean you have cancer? Because doctors use the word ‘neoplasm’ (new growth) for both cancerous (malignant neoplasms) and non-cancerous tumors (benign neoplasms), there has been some debate within medical circles about whether MPNs are types of cancer.  [...]

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MPN Clinical Trials: What to Expect

Clinical trials are research programs conducted with patients to evaluate a new medical treatment, drug, or device. Clinical studies help bridge research and patient care through the evaluation of therapies, drugs and diagnostic tools and can even lead to medical breakthroughs. Both patients and medical researchers benefit from clinical trials.  [...]

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Why Join the MPN Patient Registry?

There is a myriad of reasons to join but perhaps the single overall reason is this: knowing that your experience, combined with other patient data, can make a significant difference to the research community!  [...]

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Check back regularly for updates about what’s happening in the MPN community, from advocacy to research..

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