Bob Rosen was the first MPN patient I ever met, but that was not what he wanted you to take away from meeting him. He was first and foremost a man of action and purpose. It is those qualities that made it possible for him to undertake what became his legacy to the world, after his family, in starting the MPN Research Foundation.
He was not a person content with second best (if you’ve gone to restaurants with him you will know what I mean). And so it was unacceptable to him that he would settle with an antique treatment regimen for a poorly understood disease, which is what he was faced with in 1997 upon diagnosis with Polycythemia Vera. He would do more, not just for himself, but other MPN patients who were scattered around the country and the globe, who had not yet come together with purpose and intent. He provided that purpose and vision: fund research into MPN. Find a cure. Extend lives. Improve outcomes.
But Bob didn’t live to see the totality of his vision executed. He died on January 4th following complications from a stem cell transplant. The task now falls to us. Yes, we have new targets and a greater understanding of the biology of MPNs. But we can’t say with certainty how to cure MPN, how to stop progression. We have camaraderie among the MPN groups and better networking among patients but there are so many left out in the cold without a connection to an MPN expert or excellent care. Doctors and patients don’t have enough effective drugs for patients available now.
Bob was one patient. There are 300,000 in the United States alone, untold numbers globally. If you are reading this, you know at least one or are one yourself. It is for your life or the life of a loved one you are striving everyday. You hope for yourself and your future that by the time you need it, the answers will be there at your doctor’s fingertips. That day was not there for Bob but it will be there, eventually, for the MPN community if we work together.
Bob instilled in all of us the knowledge that we walked with the power of the patients we serve, and we march together towards our shared goal that can come to fruition with enough effort, investment and time. We didn’t have to do what was predictable; we could take risks. It is our job to take risks in order to move the science forward. Walk with us, for Bob and every other patient with an Myeloproliferative Neoplasm.
Executive Director, MPN Research Foundation