Monday, July 22, 2013

Picture update from the Trek for a Cure 2013

Celebrating their journey during the Trek for a Cure 2013
Annette DeBow and her walking crew were joined by Raquel Nunez of the MPN Research Foundation for a leg of their Trek over the weekend. We'll have an update from Raquel and Annette soon. For now, Raquel snapped this picture of the trekkers with an MPN Research Foundation banner. Thanks to all the trekkers for their hard, long journey to raise funds for MPN research!

Thursday, July 18, 2013

The power of patients (and an increase in the number of people with PV, ET, and MF)

Recently we shared the new prevalence data which put the number of people in the U.S. with PV, ET, and MF at nearly 300,000. That's a lot more people with MPN than we thought we were dealing with. 

This got us thinking about what people with PV, MF, and ET have done to drive MPN research to a better place, if not quite where we need to be. We also wanted a graphic way to display the new numbers. To illustrate what we think of when we think of "the power of patients" we put together this infographic:

Wednesday, July 3, 2013

New MPN quarterly journal launched by MPN Forum

Recently the MPN Forum launched a new quarterly journal focused on scientific medical advances. The idea behind the MPN Forum Quarterly Journal (MQJ) is to provide hematologists and scientists a professional forum to talk with other physicians and interested patients in plain English about diagnosis and treatment of myeloproliferative neoplasms.

The first issue features a roundtable discussion by MPNclinic doctors on "How I diagnose MPNs". Participants include Drs. Richard Silver, Ruben Mesa, Hans Hasselbach, Jason Gotlib, Ross Levine and Srdan Verstovsek as well as a retrospective on PV and Damanshek by Dr. J.J. Michaelis. 

The MPN Forum Quarterly Journal was created to serve family practice physicians, internists, clinicians, healthcare providers and the MPN patients and caregivers who want to explore myeloproliferative neoplasm etiology, diagnosis and therapeutic intervention. 

MQJ is produced and distributed by MPN Forum Magazine,

Monday, July 1, 2013

MF Challenge grants for 2013 announced

Today I got to do one of my favorite tasks: call grantees to let them know they have been awarded funds for their research. For the second consecutive year, the MPN Research Foundation and the Leukemia & Lymphoma Society have collaborated to review and award research projects proposing new ideas of how to stop or reverse fibrosis. Winners of these one year concept grants focusing on fibrosis and myelofibrosis are:
  • John Varga and Jonathan Licht (Northwestern University)  
  • Golam Mohi (State University of New York)  
  • Emmanuele Passegue (University of California at San Francisco )  
  • Xiaoli Wang (Mt. Sinai School of Medicine)
As in the first round of MF Challenge grants, each researcher will receive $100,000 over one year to test his/her hypothesis for these grants, the goal of which is to provide a proof of concept for ideas on how to stop or reverse fibrosis. The grant review was conducted by a multi-disciplinary group overseen by the MPN Research Foundation's Scientific Advisory Board Chair Dr. Andrew Schafer from Weil Cornell. 
The first round of MF Challenge concept grants were funded in July 2012. Progress on these four projects will be reviewed in late 2013. Projects with potential to go further will be candidates for longer term funding. A "concept grant" is used to identify innovative and novel approaches to an issue.
Fibrosis is the formation of excessive fibrous connective tissue in place of healthy tissue. The disease myelofibrosis (one of the myeloproliferative neoplasms) is characterized by fibrosis in the bone marrow.  Prognosis for sufferers of myelofibrosis varies. A small proportion of MF patients can transform to acute myeloid leukemia (AML), a type of blood and bone marrow cancer that progresses rapidly.
The potential of the MF Challenge is its ability to stimulate research in areas that are currently untested in fibrosis and myelofibrosis, offering hope to patients struggling with a relative lack of treatment options and understanding about their disease.  More information about the MF Challenge can be found at
I am so proud of the work we've done and the progress we've made in MPN science. But there is still a long way to go. After the grants are completed it's up to us and the MPN community to decide how to turn these projects into life saving and improving medicine for patients. I look forward to sharing the progress of these and our other projects with the patient community very soon. 
Barbara Van Husen President, MPN Research Foundation 
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