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 MPN Research Foundation.

He was not a person content with second best. And so it was unacceptable to him that he would settle with an antiquated 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 MPNs. Find a cure. Extend lives. Improve outcomes.

But Bob didn’t live to see the totality of his vision executed. He passed away on January 4th, 2018, following complications from a stem cell transplant. The task now remains with 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 MPNs, 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 their care, and treatment options still remain limited.

Bob was one patient. There are 300,000+ in the United States alone, untold numbers globally. If you’re reading this, you may know at least person affected or are a patient yourself. It is for your life or the life of a loved one that you are striving for every day. 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 those calculated risks in order to move the science forward. Walk with us, for Bob and every other patient with a myeloproliferative neoplasm.