MPNRF Blog

Creative Ways to Make a Difference

The world of MPN has the strange ability to bring diverse groups of people together for the common goal of understanding their polycythemia vera, essential thrombocythemia or myelofibrosis better and maybe - just maybe - figuring out how they might be able to contribute to the search for more and better treatments for MPN. MPN Research Foundation has been the beneficiary of get togethers such as Chords for a CureBowling for Blood CancerFeel the Need Feed the Cure and now... Costumes for a Cure!?   [...]

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You Don't LOOK Sick!

By guest blogger Emily, who this week is blogging about Invisible Illness Week. [...]

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MPN Research Foundation Launches New Website

This summer MPN Research Foundation has worked with our Web Committee and a professional web design and marketing team to create an updated website for the MPN Community. Our goal was to offer more access to information on the MPN world such as a Q & A with an MPN researcherreal patient stories, expanded disease information, MPN research news archives and more. [...]

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How We Do Cancer Charity

Time magazine, in it's Cancer special, published an article on how cancer research non-profits are sometimes light on the research component of their mission.  Even when it's part of their name, some organizations spend less than 50% - or even 10% on funding actual research.  There is an extent to which every organization needs to diversify their programs to address the needs of their constituents, but for us at MPN Research Foundation, even as we've added education and advocacy to our programs our focus remains as always on results-driven research. [...]

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New Projects for Spring

Now that we've finished the contracting process for new grants and collected final progress reports for the grants that have closed, we have some time to focus on the education and advocacy work that also benefits MPN patients.  MPN Research Foundation is working on some new (and old) projects that increase awareness in the medical community as well as educate patients. These projects include outreach efforts to patients (through symposia) and doctors (through cancer center visits). [...]

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Changing a Name to Fit the Science

The MPD Foundation has changed its name to MPN Research Foundation.  But don't worry; you'll still be able to reach us at our current web address and email addresses, at least for the foreseeable future.    [...]

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Spotlight on New Investigators

MPD Foundation's staff and board are constantly revisiting what it means to fund research that produces results.  We look at the various ways the work we fund affects patients - from available treatments to increasing their understanding of the scientific underpinnings of their disorder.  [...]

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Vote to Help NORD's Rare Disease Registry

NORD is the National Organization for Rare Disorders.  They bring individuals and organizations together who have one important thing in common: having or working in rare disorders.  We've mentioned our participation in their medical meetings before.  Today we discovered a new opportunity to help them create a better registry of rare diseases that is accessible to patients.   [...]

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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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