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Robert Rosen’s Legacy in MPN Advocacy

Patience is a virtue — unless you’re diagnosed with cancer.

When Robert Rosen was diagnosed with the Polycythemia Vera (PV) in 1997, he took action. PV is a type of myeloproliferative neoplasms (MPNs), a rare group of bone marrow disorders that can lead to leukemia. At the time, there was very little research on MPNs. Rosen wanted to know why. Then he wanted to know what he could do to help. Two years later he founded the MPN Research Foundation, which funds research and raises awareness about MPNs.

Passion for organization

Rosen had already made his mark in the real estate business in Chicago. After earning a bachelor’s degree from Brown University and an MBA from Northwestern, he worked on high-profile projects like the Centex Industrial Park, developed with the influential Pritzker family.

The skills that led to his success in business also made him a powerful advocate for MPN research and patient information. “He had a real talent for organizing groups of individuals who are pursuing a similar mission,” says Dr. Ruben Mesa, an international expert on MPNs who has led more than 70 clinical trials.  

Like many people with MPNs, Rosen lived for many years with only moderate symptoms. The possibility of leading a long, fulfilling life is the silver lining of an MPN diagnosis, but it means that patients have an ongoing need for information about treatment options and symptom management.

Breakthrough collaboration

This led the MPN Research Foundation to create myMPN, a platform for patients to share information about their symptoms, blood test results, drug changes and more — both with other patients and with scientific researchers. “There was a strategic need to have a robust set of information that researchers could use about the disease and how it progresses,” says Mesa. This patient information can be leveraged by scientific investigators as they search for better treatments and eventually a cure.

“It also helps patients feel more empowered,” Mesa adds. “That was a key focus under Bob’s leadership, to make advances in patient-centered ways.” Less than two years after the 2016 launch of myMPN, Rosen’s condition converted from chronic to acute. He passed away in January 2018 at the age of 74.

“His legacy was transformational,” said Mesa. “He helped to innovate a venue for patient interaction that had not existed before. Patients weren’t driving scientific questions in a collaborative way.”

“It’s truly people like Bob who change the world around them.” 

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