Written by Molly Rosen Guy, Robert Rosen's daughter

When my Dad was diagnosed with blood cancer in 1997, he was an active nine-to-five business guy. Father of three, third generation Chicagoan, he had an MBA, a pilot’s license and a house on Lake Michigan. He had recently played basketball in the Senior Olympics. But he was constantly fatigued. His fingertips were tingling. We were walking downtown the summer after my sophomore year of college and he told me:  something is not right in my body. A few months later, during Thanksgiving break, he gathered the family together and said he’d been diagnosed with polycythemia vera, a gene mutation that affected his red blood cell production. I remember seeing my mom’s mascara smeared all over her pillowcase when I went into the bedroom the next morning to grab the cordless phone off the nightstand. She’d been crying all night.

My Dad’s diagnosis coincided with a life transition. He had recently sold his real estate business and was searching for a renewed purpose in life.  “I’d always wanted to do something for the greater good,” he said years later, “and now there was a chance to do that and help myself and other patients in the process.” And so the MPN Research Foundation — a non-profit whose goal was to stimulate original research in pursuit of a cure for polycythemia vera and other related diseases collectively as myeloproliferative neoplasms (MPNs). — was born. Dad had no background in science, medical research or grant programs. But he was hell-bent on learning. He built a team focused on connecting patients with researchers. His goal was to ensure that no patient would feel as hopeless as he did upon diagnoses. Twenty years, 13 million dollars and 60 funded research projects later, he did just that.

Here’s the thing: Much of MPN happens beneath the surface. Organs enlarge, joints swell, red blood cells thicken inside the bone marrow. Most people didn’t even know Dad was sick. He didn’t look sick. He didn’t act sick. But he was sick. And in the summer of 2017, twenty years after his original diagnosis, his polycythemia vera converted to myelofibrosis, and then to leukemia, and he moved to New York to prepare for a stem cell transplant. Four months later, he died.

This progression – which is something patients fear most and researchers don’t understand – happened right before my eyes. It was terrifying. It was the worst and saddest thing that’s ever happened to me and my family. That’s why I’m writing to you today. To do what Dad cannot: to ask for your help. My Dad had access to the best doctors in the world, and still, he died before his time. Each year, hundreds of thousands of people await a similar fate. Our goal is to raise $500,000 for the Robert Rosen Memorial Fund to give those patients hope for the future and to ensure that his legacy will not be in vain.

My Dad’s story and the stories of thousands of other patients show us the road ahead. We need to make the only cure for MPNs, stem cell transplant, safer and more successful; we need to better understand disease progression and stop it in the first place; and we need to continue to put pressure on the medical community to better address patient needs and improve quality of life for people living with these chronic cancers. Medical research is expensive, and no one person can find a cure on their own. My dad knew this and built the MPN Research Foundation based on this fact. I used to tell him: make the mission of the foundation personal. Make it about you. Make yourself the face of this disease. But being front and center was not his style. He was too humble. Or maybe he was scared. Or maybe, in his case, it’s the same thing.

Your gift to the Robert Rosen Memorial Fund will keep the best minds in scientific and translational research fixed on the issues of MPNs. We still have a lot of work to do before a cure is found, but every dollar raised for the MPN Research Foundation gets us a little closer.