The MPN Heroes Celebration Event held annually at ASH is an opportunity to recognize the individuals and organizations who work hard on behalf of the MPN community and make a difference in the lives of patients living with PV, ET, and MF. Each year at this event, recipients of the MPN Heroes Recognition Program are honored based on those actions and traits that define them as heroes. This year, on November 30, 2018, the founder of the MPN Research Foundation, Bob Rosen, was honored as one of those heroes.
Bob was a man of action and purpose. Diagnosed with polycythemia vera in 1997, Bob was shocked to discover that little research was being conducted and that there were no advocacy groups working to assist people with these rare blood cancers. In 1999, Bob decided to do something about that. He established the MPN Research Foundation to focus on funding science that was aimed at the unmet needs of MPN patients. He wanted better treatments and a cure. Not just for himself, but for everyone living with Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis who hoped for more and better tomorrows.
or those of us in his orbit, Bob’s influence was profound and strongly felt. He was dedicated. Relentless. Funny and smart. A voracious reader, and an ardent student of history. Stubborn. He interrupted scientific meetings with seemingly offhand remarks that ultimately directed us to either increased vigor or alternative approaches. He was a voice for the MPN patient.
For me, he was the perfect business partner. His streaks of vision matched my more deliberative sense of process. He would say ‘why not?’;
I would say ‘but how?’ We would often agree to ‘marinate’ on an idea before taking a step, leading to many jokes about cooking and its relationship to scientific progress. He talked endlessly about his family and me about mine. We discussed the state of the world and proposed alternatives to save it. The void that his absence will make in my own life is beyond measure.
But the bottom line is this. Bob was diagnosed with PV 20 years before he progressed to MF and then immediately to AML. He used those years to make a difference for us all. Without his persistence (and relentlessness, stubbornness, etc.), MPN patients would have fewer options and less hope. The organization he built is strong and full of determination to fulfill his mission. And for each of you who have a connection to these horrible diseases, his example is like a beacon. His legacy demands of us that we do something. Change the world. Be like Bob.
Barbara Van Husen, Chairperson, MPN Research Foundation Board of Directors
*Pictured top right: The 2018 MPN Hero award winners and their nominators.
*Picture on left: (from left to right) Rebecca Rosen Shapiro, Barbara Van Husen, Molly Rosen Guy