MPNRF Blog

Goodbye 2018, Hello 2019!

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Patient advocacy groups and pharma money

You may have seen articles recently (here and here are two examples) on the issue of patient advocacy organizations or physicians taking funds from the pharmaceutical industry. We at MPNRF have been thinking a lot about this for years. In 2011 we adopted and published a policy on how MPNRF would maintain independence and neutrality in light of accepting contributions from sources that include pharmaceutical and smaller biotech companies. These funds come in the form of support for: [...]

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History was made in Chicago last month

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Empowering the MPN patient, and the Good Stem Cells into the Future

Dr. Angela Fleischman has been researching the familial prevalence of MPNs for nearly ten years. A faculty member at the University of California Irvine, she hopes to one day be able to study patients remotely to expand her research outside of the Southern California area and broaden the scope of the MPN patient family registry. Dr. Fleischman earned her Ph.D. and MD from Stanford University and knew early on her goals of the research. [...]

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What happens in Prague really shouldn't stay in Prague

Over 50 MPN patient advocate groups from around the globe congregated in Prague, Czech Republic, this August. The purpose was to share best practices, learn about what is going on in MPN research and also what issues patients in their countries are grappling with. [...]

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Are PV, ET and MF passed down in families?

Written by Robyn Scherber, MD [...]

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The Importance of Partnerships in the MPN Community

They bring people together in pursuit of a common cause and put many minds to work on a problem, increasing the likelihood that a solution is found. That’s why we are getting into the business of creating partnerships. The MPN Research Foundation believes that researchers in the field should be collaborating across institutions to solve some of our hardest questions. We are eager to bridge the divide and offer a framework for these kinds of relationships to develop and thrive. [...]

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Blood article discusses epigenetic changes in Myelofibrosis following discontinuation of ruxolitinib

The MPN community is discussing the article by MPN researchers from MD Anderson - Clonal evolution and outcomes in myelofibrosis after ruxolitinib discontinuation - a retrospective study of 107 patients who discontinued ruxolitinib. The authors discussed the acquisition of additional mutations which took place in 35% of patients on Ruxolitinib, most notable the ASXL1 gene, which was found in 64% of patients who acquired new mutations. 
 
We asked one of the authors - Dr. Serge Verstovsek - about what patients should take away from this article. He responded "While ruxolitinib in great majority of patients controls symptoms and signs of myelofibrosis very well, and with that may prolong life expectancy, it does not prevent a change in diseased cells, which can acquire new mutations or other characteristics that will make them resistant to ruxolitinib. This leads to a loss of a control and poor overall outcome. Therefore, one would like to encourage patient to consider a bone marrow transplant while doing well on ruxolitinib, to be potentially cured." 
 
This provides further motivation for studies that explore why people with ET or PV progress to MF and/or have a worsened prognosis, and how to stop that progression. It also supports the need for more therapy options for patients who can't take Ruxolitinib, or who must stop taking it. We encourage you to share this with your doctors, nurses and care team. 
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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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