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.   

Why the change? Because in 2008 the World Health Organization (WHO) developed a new classification system for the Myeloproliferative Disorders (MPDs), and in the process changed the official designation to Myeloproliferative Neoplasms (MPNs).   They also added a handful of new blood diseases to the category, such as chronic neutrophilic leukemia, chronic eosinophilic leukemia, hypereosinophilic syndrome and the not-very helpful "MPNs, unclassifiable."

However, the three diseases that have always been our concern - polycythemia vera (PV), essential thrombocythemia (ET) and myelofibrosis (MF) - are still considered the "classic" Philadelphia chromosome-negative [Ph(1)] myeloproliferative neoplasms.  Our focus will remain on funding research to find a cure for these three diseases.

The word "neoplasm" actually defines our diseases far more precisely than "disorder" did. Neoplasia (Greek for "new growth") means the abnormal proliferation of cells - in our case, one or more lines of blood cells.  Many kinds of neoplasia result in lumps or tumors, either benign or malignant.  They are called neoplasms, too, and are a good deal more common than our blood cell neoplasms; so friends may think you're using the term "neoplasm" incorrectly.  You won't be.

Though we've changed our name we're still pursuing the same research goals as always.  With your continued support we are able to be sure that the understanding of MPNs is constantly improving, leading to steps forward in science, therapies, and of course, nomenclature.  This name change puts us in line with the latest thinking of authorities like WHO and we think it's a change that will be beneficial to the MPN community's understanding of their condition.  Please take a moment to read about our new 2011 research grants, and consider giving the fact that this research is funded primarily by MPN patients around the world.  They will be responsible for the next advancement in treatments. 

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.

In addition to new space we are also looking forward to making decisions regarding the new grant proposals we received with 2010's request for proposals.  Between our New Investigator and Established Investigator programs we have received over 40 proposals.  A cursory review suggests some exciting opportunities to accelerate research into the myeloproliferative disorders: polycythemia vera, essential thrombocythemia and myelofibrosis.  In November the MPD Foundation's Scientific Advisory Board will work with an additional team of reviewers to score these proposals on the basis of scientific merit, relevance to MPDs, and potential for collaboration.  We make our funding decisions and announcements in February 2011. 

The MPD Foundation has always been focused on fostering collaboration among researchers as well as between the research community, industry and clinicians.  We made a specific plea in the 2010 Challenge Grant request for proposals (RFP) for proposals that highlighted collaboration.  It is our belief that research occurring in a community instead of a silo will facilitate faster breakthroughs that will help patients.  We now know that we are not alone in our belief as more patient-driven and research focused non-profits benefit from this model of operation.  It is our goal to make this new way of doing business work for MPD patients now. 

MPD Patient Symposia Educate and Empower

By Ann Brazeau

The MPD Foundation believes that an educated patient is an empowered patient who can share what they know with their health care professionals to optimize treatment protocols and be able to fully participate in important decisions for their future care. To that end, in May 2010, the MPD Foundation hosted a patient education symposium in San Mateo, CA. Guest speakers included Drs. Ayalew Tefferi and Ruben Mesa from the Mayo Clinic, Dr. Jason Gotlib from Stanford, Dr. Ann Mullally from Harvard, Dr. David Leibowitz from the Palo Alto Cancer Center and author Joy Selak. For those who couldn't make it, a video of the event is available here.

Patients, family members and physicians are encouraged to attend these programs where they will hear from leading experts in the field of myeloproliferative disorders / neoplasms. Research updates, information on current clinical trials and day to day maintenance of these rare blood cancers are discussed. Open forums are provided for questions and one on one opportunities to speak with the researchers and clinicians. Attendees enjoy meeting other patients in a safe and warm environment.

This fall, the MPD Foundation will host a symposium in San Diego, California. Dr. Catriona Jamieson will be our keynote speaker and will be joined by other leading MPD researchers and clinicians. Dr. Jamieson, MD, PhD, is Assistant Professor of Medicine/Division of Hematology-Oncology and Director for Stem Cell Research at Moores Universtiy of California San Diego Cancer Center. Dr. Jamieson studies the mutant stem cells and progenitor cells in myeloproliferative disorders / neoplasms. Her studies have run the gamut from identifying a promising treatment in the laboratory, to opening and completing the first clinical trial, to target cancer stem cells in humans. Please continue to check our Events page for updates on the next MPD symposium.

www.mpdfoundation.org