Science & Medicine

Barbara’s story

What happened? What’s ahead?

-Barbara Van Husen

When Zhen asked me to reflect on the last 10 years I was overwhelmed at first.  Where to start.  How to end.

Ten years ago I was already 10 years into the MPN world, and I could not believe how much had changed since 2000,

Bob Rosen, Barbara Van Husen

when it was hard to find anyone doing anything related to MPN science.  By 2010, we had the JAK2 discovery and a veritable horse race of biotechs and companies racing to develop JAK inhibitors.  Success was in the air.

The MPN Research Foundation was an exciting place to be.  We met with top-notch academic scientists who were optimistic about progress.  More and more commercial enterprises were becoming aware of and interested in MPNs.  The MPN community was alive with patient organizations that kept patients and their supporters on top of developments.  MPN Forum was the most outspoken and challenging of those voices.  Change was in the air.

Ten years later, we find ourselves in a different world, with both discouragement and anticipation vying for our attention.  JAK inhibitors are now available, although it took until 2011 for the first to be approved by the FDA, and 8 more years for the second.  We now know that these inhibitors, while valuable treatments, are not the home run we had hoped for.  MPNs, we now know, are too heterogeneous and complex to allow for a single solution.

On the positive side, the MPN scientific world has exploded with new ideas, compounds, methods of action.  When we last checked, there were over 200 MPN-elated clinical trials listed in clinicaltrials.gov.  This is astounding and can only be good news.

And most of all, in the last 10 years we have lost some of our most powerful voices.  For myself, the most personal loss was my good friend Bob Rosen, who led the MPNRF from its beginning and always greeted good scientific news with ‘but what’s next?’.

The loss of so many friends who have fought the good fight can only be bearable if we keep fighting, and disease progression, which is still an unraveled mystery, is top of mind at the Foundation and in the MPN world in general.

Zhenya, Barbara & Robert.
Photo: Raquel Nunez

Zhen’s decision to stop publication of MPN Forum should be a shout out to the next generation of MPN leaders. As Bob would have said, we are not done.

So I close this with optimism.  There are more scientists, both academic and industry, engaged in MPN science than ever before.  At the Foundation, a new generation of leaders on the Board of Directors and on the staff are taking up the challenge of annihilating these diseases.  We are particularly happy that Kapila Viges has succeeded our wonderful Michelle Woehrle as Executive Director, and the Foundation anticipates larger and more impactful investments in MPN research that will truly ‘Change the Prognosis’ for MPN patients.

My thanks to Zhen for being a firecracker and a friend.  Some truly good things can come out of bad situations, and the people I have met in my MPN life have enriched my life it beyond measure.  I can’t wait to see the progress I believe will come in the NEXT 10 years.

 

© MPNforum, LLC , MPNforum.com, and the MPNforum Quarterly Journal 2020. MPNforum is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License. Reproduction is permitted provided full and clear credit is given to authors and MPNforum.com with appropriate and specific direction to the original content.

 

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