The primary mission of the MPN Research Foundation is to stimulate original research in pursuit of new treatments -- and eventually a cure -- for polycythemia vera, essential thrombocythemia and myelofibrosis, known collectively as myeloproliferative neoplasms (MPN). In addition, the MPN Research Foundation promotes collaboration in the scientific community to accelerate research, and serves as a powerful advocacy group for patients and their families.
Diagnosed with polycythemia vera in 1997, Chicago business man Robert Rosen was shocked to learn that little research was being conducted on the myeloproliferative disorders (MPD) in America and no advocacy groups were working to promote medical research for the MPDs. Towards the end of 1999, Rosen, Bob Pritzker and two other MPD patients established the MPD Foundation, the only non-profit organization dedicated to helping MPN patients live longer and enjoy a better quality of life by encouraging and funding new research into the causes and potential cures for MPNs, particularly polycythemia vera, primary myelofibrosis and essential thrombocythemia.
Founded by patients, for patients, terms on every research grant are negotiated to maximize the dollars invested in actual research, with approximately 80% of the funds raised channeled directly into supporting myeloproliferative neoplasm research. The Foundation’s esteemed Scientific Advisory Board utilizes a rigorous selection process to ensure donations are allocated to the most innovative research projects. The scientific advisory board includes highly regarded physicians from Scripps, University of Utah, BC Cancer Research Center and Weill Cornell.
In 2011, the organization changed its name to the MPN Research Foundation to better reflect The World Health Organization’s reclassification of myeloproliferative disorders (MPDs) to myeloproliferative neoplasms (MPNs). The word "neoplasm" actually defines our diseases far more precisely than "disorders" did, as neoplasia (Greek for "new growth") means the abnormal proliferation of cells -- in our case, one or more lines of blood cells.
To date, the Foundation has awarded over eight million dollars for MPN research. While our priority remains on funding innovative and accountable research, we have also increased our efforts to educate and empower the MPN community of patients, family members, doctors and researchers. We distribute MPN patient brochures and a newsletter to inform patients on key advances in MPN research; sponsor patient conferences; interface with government organizations on key patient issues; and link patients to support groups worldwide.
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