International MPN News, Science & Opinion

Without him

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.

 

Comments on: "Without him" (4)

  1. hawthornch said:

    Zhen, that is a wonderful tribute to Bob Rosen. I only ever spoke on the phone with him but I was touched by how impassioned he was to find a cure for MPNs. He said, “Ken, we are going to beat this”. You have outlined in your article the ways in which Bob Rosen has made a difference. Vale Bob Rosen

  2. Zhen, that is a wonderful tribute to Bob Rosen.

  3. BONNIE EVANS said:

    Wonderful testimony to Bob Rosen who led the charge for research into MPNs. I am grateful for Bob’s
    service to the MPN family. He made a difference and made the world a better place.

  4. I would Like to be involved. I have little money, But , I am not shy and have been blessed with an ability to talk with people. I share my journey readily and I wish I could help more. I was DX in 2010 with MF and was not given a promising future at this time. Went on Jakafi in 2011 and was Lucky enough to speak before Incyte, (the entire company) able my progress. Then sadly it stopped working after about 1.4 years and I went through 1.5 years of Transfusions and thought for sure that was it, the end was near. I was not satisfied with that and starting searching for a trial. Went to several DR and Hospitals and finally found Dr Carol Miller, @ St Anges, Baltimore, Md. Who agreed to give me a chance. This was in Jan 2016. The trial was Momelotinib. My Platelet count was 56 at the time, my count is now 156. My Hem. was 7.9 and is now at 10.4. I am a very lucky gal. It looks like my trial will end this spring and I am here to tell you I am scared. I am 68 Years old and Have had a pretty wonderful life, now my goal to to help. I will be looking for a new trial. I am not ready to give up yet and hopefully I can help someone else by doing a trial.
    If you find a position where I can help. Let me know.
    I am so sorry for our loss of Bob. God Bless Louise Haugh

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