What do we do without him?
The image that comes to mind is sweet. He is not at work, at the head of the conference table, or leaning forward to question a CEO or molecular biologist. Not in Chicago, his home base. Not even surrounded by his family, his grandchildren or talking with his beloved wife.
There is a bookstore in Asheville he loved. It’s in the Grove Park Arcade and has floors and nooks and corners of used and new books in an informal coffee house setting, comfortable tables and chairs available, a coffee bar, dogs allowed.
I see him standing in a corner, looking through a book, leaning against the wall. He’s taller than anyone around him, dark haired and intense, briefly absorbed in reading.
He looks like an academic, a post doc or associate professor, a quiet ,shy, gangly athlete of a man. Searching for answers.
Robert Rosen doesn’t look like the most influential, the most successful, force for medical research into myeloproliferative neoplasms that ever lived.
And yet he is.
When he first started the foundation he was ridiculed for believing he could help advance MPN treatment. He didn’t know the drug business, they said. He did not know what he was up against.
He followed his own path. For years the MPN Research Foundation relied totally on personal resources and patient/caregiver donations. It ran local seminars, published newsletters, on-line resources and assembled brilliant scientists and physicians to search out and review promising new research approaches.
Without him, we would not have Jakafi. It’s as simple as that.
Without him we would not have the MPD Research Consortium, the MPN tissue bank, the discovery of CALR, MPN inroads into CRISPR and gene therapy or the current deep scientific and clinical exploration of interferon.
Without him, we would not have hope.
He welded our MPN community together through his example, by reaching into scientific labs, through community outreach, education, and support programs. He built a tight team, equally committed to find a cure for MPNs.,
And now he is gone.
Bob Rosen, with his partner Barbara Van Husen — both of whom served without compensation – opened new territory for patient engagement in encouraging and funding medical research. In the process they ignited the explosion of MPN discoveries that followed.
What do we do without him?
Beyond despair, beyond grief, we can follow his lead. We can personally commit to help find and fund scientific research through his MPNRF.
We can pour money, time, and love into the Foundation that he has left us. The Foundation that has sustained us for a dozen years.
Talk to Michelle Woerhle, executive director of the Foundation, about how you can get involved. And send your check here. There’s no better way to help end this rare and terrible disease than honoring the glittering legacy of this heroic, gentle man.