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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.   

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. 

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.

We also happen to be impacting the lives of those in the research community, including a group we've focused on through our last two grant cycles: new investigators.  

This is a group we define as being new to the field of MPN or simply new to independent research and desiring to work in MPN.  Although we've funded up and coming researchers in the past, since 2008 it has been a goal of ours to target this group for funding along with our grants to more experienced investigators.  Both types of investigators are working towards the goal of finding the causes of and potential cures for the myeloproliferative neoplasms.  

On that note we'd like to introduce some of our newest grant recipients:

Wei Tong, PhD, Children's Hospital of Pennsylvania

Dr. Tong will be working on a project titled "K63 Ubiquitination in JAK2 Signaling and Myeloproliferative Neoplasms".  The bottom line is that Dr. Tong is trying to determine how LNK affects JAK2 signaling.  JAK2 is basically an on-off switch whose malfunction is present in many MPNs.  LNK normally regulates the JAK2 switch to prevent myeloproliferation; mutated versions fail to turn off the signaling.  

Toshiaki Kawakami, MD PhD, La Jolla Institute for Allergy and Immunology.

Dr. Kawakami's project is titled "SPS Complex in MPD".  In this project he will be studying a series of genes whose absence in mice is known to cause tumors and myeloproliferative neoplasms.  His hypothesis is that the same thing happens in humans, and if correct, the discovery could lead directly to new therapeutic targets for MPN drug development.

Saghi Ghaffari, MD PhD, Mt. Sinai School of Medicine

Dr. Ghaffari's project is titled "Understanding Molecular Mechanisms of Regulation of Myeloproliferative Disorders in Mouse and Human".  With this project Dr. Ghaffari will be investigating a different signaling mechanism altogether whose failure may be responsible for myeloproliferation.  This is important because the JAK2 mutation is not present in all MPN patients; there must be at least one other mutation to account for those cases.


We will monitor their progress and report back as their work develops.  As one of the only organizations serving the needs of patients with myeloproliferative neoplasms we are committed to not only funding such projects but also to providing information and support for MPN patients.    

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.  

Pepsi's Challenge Refresh Program has selected NORD to be in the running to receive $50,000 to improve and expand their registry of diseases. NORD would like to make their existing registry more user friendly, including adopting language that is more comprehensible to patients and the lay public.  

We are pleased to say that helping NORD (and, by extension, people living with a rare disorder such as MPD / MPN) is free and easy.  Just register here and vote for NORD's project.  The 10 organizations who receive the most votes will each win $50,000. For the 1 in 10 people in the United States who have a rare disease (and more internationally), having access to information on their disease is vital in managing their treatment and symptoms. 

We at MPD Foundation believe it is important to partner with organizations who are working in the area of rare diseases.  There is potential for our struggles and strengths to overlap and help each of us understand our respective struggle.  Our relationship with NORD is just one of many we have established in the orphan and rare disease community.