Science & Medicine

Time to Rethink the MPN Research Foundation

The email was from Michelle but it was far from our typical exchange over the years.

“I write this from my home, which has become my office now thanks to Covid- 19. I want to personally let you know that once a replacement is found, I will be stepping down from the role of Executive Director of the MPN Research Foundation….The search a new ED is well underway.”

This is not a trivial personnel announcement but a potentially game-changing event for the entire MPN community.

Robert Rosen, founder of MPNRF, a PV patient himself who succumbed to the progression of myelofibrosis and a late failed stem cell transplant, was the irreplaceable heart and soul of the Foundation for 20 years. Together with his friend and business partner, Barbara Van Husen, and a very small staff in a very small office, he built a cadre of world class MPN specialists and scientists to help guide MPN research efforts for a generation. In the process, virtually every major scientific development — from JAK2 to CALR — and many of the leading researchers were funded by the Foundation. Michelle played a part in that group.

Rosen’s death in January, 2018 could have spelled the end for the Foundation. That it didn’t is in no small part due to the work of Michelle Woerhle. Michelle, always the long-term skillful operational manager stepped up to be the driving force behind the MPN Research Foundation. Mentored by Bob and Barbara, she has supplied the energy, brain power, creativity and persistence that brought MPNRF safely through its most challenging times. Targeted investment in expanding interferon research, funding MPN progression marker research and expanding the international cooperative network are just some of her key accompishments.

Is the MPNRF overextended? The original mission was to find a cure for MPN. To fund basic scientific research to uncover the processes that drive MPNs and support therapeutic interventions.

We did not always agree with every MPNRF initiative..or even the idea that the Foundation was expanding into projects like the Patient Registry and lobbying the FDA.  But, because Michelle and Barbara were at the helm, we never doubted the will and integrity that powered those efforts.

Where to now?

The easy choice would be to select a new Executive Director based solely on business, medical or scientific credentials. Let’s hope that doesn’t happen without exploring alternatives.  It might be a good time to take a deep breath and organize a retreat with the MPNRF’s  Board and Scientific Advisors to think through the next steps.

The enormous success of MPNRF was built on the passion of Robert Rosen, an MPN patient with investment experience. It continued under the guidance of Barbara Van Husen and Michelle Woerhle to make important targeted research investments.   And support patient advocacy initiatives.

This is a time of epochal change both within and outside the MPN community. There is always enormous pressure from Corporate Sponsors to guide operational decisions, promote drugs and  clinical trials, represent the interests of Big Pharma.

These Sponsors include the same commercial interests that have given tens of millions of dollars to MPN physicians and medical institutions to further their own ends. Once deciding to open its coffers to greater drug company investment MPNRF has been forced to walk a very tight line. The Foundation has to maintain corporate relations that permit expanded independent research grants and remain MPN patient centered. It took a Michelle and Barbara to pull it off. What now?

Since the death of Robert Rosen there have been no MPN patients on the Staff of MPNRF. The Foundation has expanded its activities into patient advocacy and a clinical trial oriented Patient Registry. (Full disclosure: The Foundation also partially funded our MAGIC  Stem Cell Transplant and Myelofibrosis Risk Calculator project.)

Now, given the explosion in molecular biology and genetic engineering — coupled with the uncertain exit from CORVID-19 quarantine —  It might be a good time for the Foundation to  return to its roots, focus down on research initiatives. To that end, its recruiting efforts for a new Executive Director might include some of the younger, research and science-oriented business savvy MPN patients. 

(Opinion):

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