MPNRF Blog

Black Lives Matter

The nation has been roiled by a movement that recognizes how long overdue we are in dealing with inequality on the basis of race. Rather than stay silent because our mission is focused on supporting people living with a myeloproliferative neoplasm, we realized that this IS our lane. We know that there are systemic biases on the basis of race that are part of our culture, which includes medical, nonprofit and government agencies. MPN Research Foundation's commitment is to serving and supporting all those living with an MPN as well as the medical and research community. We commit to listening to their experiences and to do our part to end racial biases where we can. We say that Black Lives Matter. [...]

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Article Published Offering Patient's Perspective

Congratulations to two of MPNRF’s colleagues from our international network, The MPN Advocates Network, who have recently published an article outlining challenges facing MPN patients! Cheryl Petruk, Executive Director of the Canadian MPN Research Foundation and Jon Mathias of MPN Voice in the UK teamed up to author the article which is available online here and will be in print in an upcoming issue of Springer’s Advances in Therapy*.  [...]

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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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