MPNRF Blog

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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Whirlwind of Activity

Wow - is it mid-November already?!  It must be, since we finished hosting our final MPD patient symposium of the year and are starting to think about wrapping up 2010.  We've also finished our review of the grant applications we received for the RFP issued this May.  I say "we", but what I really mean is the panel of experts we bring in to assist us in evaluating proposals on their scientific merit.   [...]

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New Digs and New Grants

In June the MPD Foundation moved from a shared sublet at Willis (nee Sears) Tower to a new office on Michigan Avenue .  In addition to cheaper rent, this new space offers a better layout for Foundation staff and volunteers.  And with this new space comes a new opportunity to show it off.  As such, those in the Chicagoland area are invited to attend our House Warming on Thursday, September 30, 2010 at 5:30.  For more details or to RVSP contact Juliana at jgordon@mpdfoundation.org or 312-683-7249. [...]

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MPD Patients Connect Through Social Media

With increased access to and understanding of technology, people are finding their way online, searching out interests like cooking, basketball and even myelofibrosis.  Once assumed to be the domain of the young and frivolous, a new group has turned to the internet as a means of learning about and connecting to what is important to them.  This is especially true for patients with orphan diseases like polycythemia vera, essential thrombocythemia and myelofibrosis where the next closest patient may be hundreds of miles away. [...]

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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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