Science & Medicine

It’s Not Your Daddy’s MPN Research Foundation

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Barba

 

 

It’s not your Daddy’s MPN Research Foundation.

Zhenya Senyak

With the clarity of long perspective, I look out across the MPN landscape with the sharp realization that the community, the leadership, the stewards and workers in our hematologic vineyard have all changed since first we published MPNforum in April, 2011.   Our heroes have fallen in the uneven battle with a deeply hidden vicious enemy – Harvey Gould, Robert Rosen, Joyce Niblack, Robert Tollen, Ian Sweet, Kathy Dubin Flynn, and legions of friends who live in memory and awe. New leaders have emerged.  All has changed with finality and speed.

Our hope and faith in science turning the balance in our favor is now placed in new, in many ways radically different, hands.

The old guard was overwhelmingly male, carrying their MPNs into battle like a wound and shield.  They were patients focused on discovery, education and support.  Today, backing up a handful of scientists and committed physicians,  we rely on a new breed of working patient heroes like Julie Rittenburgh Libon, David Alexander, Diane Blackstock, David Denny, Chris Harper – patients who, without compensation, without financial backing,  work hard and diligently to support fellow patients.

And backing us up, we have the new MPN Research Foundation.  Like the storied old two-tone Buick Roadmaster with its portholes, soft suspension and Dynaflow transmission,  this 2019 model is not your Daddy’s vehicle.

Youthful and exuberant, mostly female, without a single staffer suffering from an MPN, today’s Chicago-based crew has significantly expanded the mission of the Foundation whose $12 million in carefuly curated grants have funded every major MPN breakthrough in the past decade!

When Michelle Woehrle first came to work at the MPNRF, she was the fourth employee. Unpaid top management, Robert Rosen, a polycythemia vera patient, and his talented and faithful operational chief, Barbara Van Husen were building a revolutionary Foundation.  Ann Brazeau (MPN Advocacy and Education) was on staff and all four worked out of the small Michigan Avenue offices still occupied by MPNRF.  At a time few on the planet – including physicians and hematologists– were deeply aware of MPNs. Significant breakthroughs reported in the scientific Journals were rare.

Rosen, an early retiree from his real estate business, used his own funds in the beginning to help find a cure for MPNs by sponsoring innovative research. In those early days, they shared the work of building a non profit, raising funds and recruiting a Scientific Advisory Board to help search out, review and fund the most promising MPN research.

Along the way they started to build the Foundation’s next generation made a few hires, and added responsibilities for more junior staff.  It was none too soon.

At the very beginning of 2018, it all came crashing down. Almost. For years Robert Rosen battled the progression of his PV to myelofibrosis. When the first clear signs of acute myeloid leukemia emerged he headed for a salvage stem cell transplant. He did not survive.

Shocked, absent their leader and key driving force, the Foundation staff regrouped under the continued guidance of Barbara Van Husen and under pressure of a growing mass of research proposals and scientific discoveries.

It is here that the early efforts at building succession paid off. In the past few years, Michelle Woehrle, active at the Foundation since 2007, had been given increasing management responsibilities includng chairing the critical annual Roundtable meeting at which initial grant proposals were reviewed. Barbara backed off day to day operations functioning more as a Chairman and overseer as Michelle supervised the staff and promising new projects.

Fast forward past the turbulent years.  Today, Michelle Woehrle is behind the wheel, driving the MPNRF crew of mostly Millennials into the future. Our future.

This is a look at the new turbo-charged, jacked up, high performance high tech all electric vehicle that is today’s MPN Research Foundation

Full disclosure

MPNRF has been a  contributing sponsor to several personal and  MPNforum projects, notably the CREATE CRISPR Seminar at ASH and the SCT and MF Risk calculators .   Beyond that, the principals have been close and trusted friends. We have not always agreed on projects and procedures but I have never doubted their integrity, passion and primary concern for the MPN patient community.

The Chief

Starting as a friend to Bob Rosen, founder of MPNRF, Barbara Van Husen turned her IT and financial skills into the fulltime driving operational tool that built created the Foundation’s dominant role in funding MPN independent research.  Van Husen,  whatever her title, has been the chief operating officer from the beginning.  Unpaid and passionately committed to the MPNRF mission, Van Husen advanced from a willing volunteer to one of the industry’s primary scientific and development resources.  Recruiting and managing staff, seeking out scientific breakthroughs, implementing projects, she was the perfect counterpoint to Chairman Robert Rosen”s visionary pursuit of an MPN cure. Barbara not only negotiated with the world’s top hematologists and scientitsts, CEOs and researchers, but is herself  a named author in scientific papers and direct participant in allocation of research funds.

She foresaw the need for new leadership in the suddenly exploding environment of MPN research and scientific publishing following on new genomic and clinical breakthroughs.  With the passing of her close friend and mentor Rober Rosen at the beginning of  2018,  she accelerated the process of bringing her young crew into full management control of the MPNRF.  Today, Barbara Van Husen, as CEO and Chairman of the Board, plays a primarily guiding and oversight role in the Foundation’s affairs.

 

The Board

The MPN Research Foundation Board of Directors was always a varied, skilled and powerful group.  It included Robert Pritzker, founder of Hyatt and one time owner of Braniff AIrlines, brother to Jay Pritzker, the uncle of IIllinois Governor, Jay Robert Pritzker.. advertising creative director Alling “Woody” Woodruff,  Celia Miltz (Friends of ET), David Boule ,  former managing partner of the New York Ernst and Young offices – and currently active board member in raising funds and oversight for both the MPNRF and Dr. Richard T. Silver’s Cancer Research and Technology foundations — and Joyce Niblack,  MPN patient advocate pioneer and founder of the MPN Education Roundation.

There’s a persistent story, possibly apocryphal, that at one time Joyce Niblack and Robert Rosen both driving forces in the early MPD Foundation operating out of 180 N. Michigan Ave, had differences of opinion on whether patient education or research grants was the best path forward.  An agreement brokered by the Mayo Cliniics famed Ayelew Tefferi in a Chicago meeting, resulted in splitting off into two separate Foundations now serving the MPN community,

Also on the current Board is a somewhat surprising appointment, the brilliant Pamela Murphy, retired architect of Incyte’s marketing communications program introducing Jakafi.  (Incyte with its partner Novartis is by far the dominant Big Pharma contributor to MPN specialists and institutions worldwide as well as one of the commercial sponsors contributing to the MPNRF.)

Another new member of the MPNRF board is millennial Brandon Goetzman.   Brandon a major real estate investment manager and one-time pre-med student, took his primary interest in medical science and focused on the myeloproliferative neoplasms, contributing substantial operational insights to MPNRF via regular reporting on basic scientific research.

I have a passion for cancer research having had close family members and friends suffer from different forms of the disease including a Chicago commercial real estate industry veteran Bob Rosen. Bob’s founding and growth of the MPN Research Foundation in Chicago was an inspiration to me in what can be accomplished in moving cancer research forward by those without an M.D. or Ph.D. This drove my focus on Myeloproliferative Neoplasms leading me to join the MPN Research Foundation as a board member in 2017.”

Since 2018, Brandon has chaired the Foundation’s Scientific Steering Committee which assists in setting the strategic direction of the foundation’s research activities  He is also involved in the Foundation’s fundraising activities.  Brandon graduated from the University of Wisconsin, Madison in 2008 with a Bachelor  of Business Administration

The Crew

Michelle Woehrle

We are marching towards 20 years since the inception of the Foundation.  We have lived with increasing knowledge about the underlying biology of the diseases, but there are still gaps in that knowledge. The happy news is that there are many people working on MPN globally. Our hardest job is keeping on top of what everyone is doing to ensure we are helping smooth the way for good research ideas that need funds, connections, a spotlight among patients. We know that there is a lot of unmet need among the patients, and the path to meeting those needs is not straightforward. We know we can’t stop, and we can’t slow down. Rather, we need to continue to push for clarity and for cooperation among the thought leaders in the field who have expertise, data, and a podium.

 

What we’re really still missing are therapies that are truly transformational. There’s work going on in labs around the globe that we hope gets us closer to that reality, but nothing is coming fast enough for the patients we serve. This is fresh on my mind as we go into next week’s grant review for the MPN Challenge Grant Program. And so we continue to look for ways we can accelerate research… Is it by helping patients track their own symptoms and outcome prospectively to look for new hypotheses? is it in investing in understanding the biology of the disease through the lens of Interferon? Is it helping to educate the FDA on the patient experience so that they are well informed when evaluating new drug trials? Is it in ensuring we are prepared for precision medicine therapies for all with an MPN? There are many options, and we are a relatively small engine. But we are here, we are listening and learning and we will never stop trying.”

 

Lindsey Whyte

I am a patient advocate and ardent supporter of medical research to eradicate disease. Most importantly, I believe in patients sharing their stories so that unmet needs in research will be addressed. Too many patients suffer in silence and there is a disconnect between their stories and research going on in the laboratories.

I manage myMPN – a recently launched registry where all patients with myeloproliferative neoplasms including polycythemia vera, essential thrombocythemia and myelofibrosis can share their experience with their disease. The information we collect is used to drive research and improve patient outcomes. I am also working on the development of additional longitudinal research projects aimed at identifying the causes of progression in MPNs.

On a professional level, my post-MBA (2000) career started in banking and financial services consulting. I switched over to rare disease research project management in 2009 following the birth of my first child. My undergraduate degree is in World Politics and I speak French and German fluently. On a personal level, I spend my free time enjoying the great outdoors with my two young children, husband and dog.

Lexi Moore

As the Marketing and Outreach Manager, I oversee all areas of communications and marketing, including the creation of marketing and educational materials, updating and writing content for the MPNRF website, managing our social media platforms, implementing our fundraising campaigns, etc. I also interact with MPN patients and caregivers by providing valuable online resources, physical educational materials and more. Originally from Iowa, I earned my bachelor’s degree from the University of Northern Iowa where I found my passion for working in philanthropy. The MPN Research Foundation provides me with an opportunity to make a daily impact on the lives of those in the community that we serve.

 

 

 

 

Erika Cannaday

Ericka Cannaday is the Operations Manager at the MPN Research Foundation.  Ericka manages the day to day operational running of the office. These tasks include but are not limited to: preparing for yearly audits, daily accounting functions, office inventory, new employee onboarding, meeting management, and facilitating the production of the foundation’s industry newsletter.  Ericka received her master’s degree of Management in Healthcare from Robert Morris University in the spring of 2016 and appreciates being able to work in a field that allows her to give back to the community.

 

 

 

 

 

Rick Winneker, PhD.

Rick Winneker had a long-term consulting relationship with MPNRF before joining the Foundation as a part-time staff focused on scientific review and development of science-related projects.  He has held several pivotal positions in his career, most recently as Senior Vice President, reporting to the Chief Mission Officer at the  Leukemia & This was followed by a successful transition to the voluntary health care non-profit industry to lead the expansion and strengthening of the research team, oversee and build the research portfolio and develop the strategic plan of future innovations in blood cancer research. 

‘Rick has worked in all phases of research and development including building several pharmaceutical research organizations. Most notable is his work shaping and leading several pharmaceutical research departments in endocrinology and women’s health that resulted in 14 compounds being delivered to the development pipeline along with four registered products.

In his role, Rick has evaluated challenge grants and helped shape the interferon project  His focus is on the challenge grants…the interferon initiative and  on going other as they come up research oriented projects as they come up .

The Program

There are multiple programs making up the New MPNFR playbook

  • 2019 RFP (grant review 2019
  • Stem cell timing task force
  • Externally-led Patient-Focused Drug Development meeting
  • The Interferon Initiative
  • Michelle: “We will continue to explore the progression marker studies but that is not currently an on-going program.”
  • An MPN Patient Registry, http://www.mpnresearchfoundation.org/myMPN

Grants and Requests for Proposals

According to Michelle, “The MPNRF wheelhouse is giving out basic science grants, $100,000 annual grants for research. We have been doing in it for over 10 years  funding some of MPN’s most significant breakthrough research with over $12 million in grants. We need to preserve the process that has earned MPNRF the respect and credibility that gives us access to the international scientific community.  These challenge grants and the resulting proposals are the best way to get a read on what’s happening in MPN and related fields. At the same time we need to continue to be deliberate and proactive about increasing collaboration among all the scientists in the space  First thing we did along those lines was the MPN Research Alliance   Currently the MPN Interferon Inotiative is a good example of the kind of ways we can be Impactful.”

Stem cell Timing Taskforce

This project focused on developing a simple, clinically validated graphic system that could be used by patients and hematologists alike to help gauge appropriate time for qualified patients to start stem cell transplant.  A taskforce of internationally renowned scientists, hematologists, transplant specialists and patient advocates was assembled to oversee the work funded by the Foundation. Deployed late in 2018, the Spectrum Stem cell Timing Tool (SSTT) was immediately adopted with more than 150,000 visits to the page logged in its first months on line.  An upgrade, incorporating a mutational component will be introduced this summer.

The Patient Focused Drug Development Meeting  (http://www.mpnresearchfoundation.org/PFDD)

In September, 2018, we along with Drs. Robyn Scherber and Ruben Mesa submitted a Letter of Intent to host a Patient Focused Drug Development meeting.  The FDA had begin to hold internal meetings a few years earlier and opened this opportunity to patient advocates. We are raising funds from sponsors to pay for the meeting but the agenda and format are completely under our control.  And while we’re talking to other advocates, researchers and clinicians, this meeting is by and for patients to share their experiences with the drug regulators.

People can attend in person, participate in the TrueReply survey and /or attend via webinar. What is learned at the meeting will be collected in a “Voice of the Patient” report which can serve as a reference for anyone working in MPN drug development. We’ll of course separate PV, ET and MF. But we can only do this meeting once, so the pressure to get it right is huge.”

What’s the hardest part of living with your MPN?

How does your MPN impact your hopes and plans for your  life?

Believe it or not, to help formulate their priorities and understanding of MPN patient concerns the FDA wants to know. And the Foundation is putting together an audio montage based on your input to let them know. The big event, when the Foundation and MPN patient advocates meet in Washington D.C. to play that tape and get into an in-deptn discussion over future MPN research initiatives, takes place this September.

But there are only 12 days left for you to sound off

So dial 877 851 -5399 and be prepared to answer those two questions.

Your responses will be completely anonymous although your voice responses will be used in the audio montage and your answers and  following discussion may be included in the followup resport to the FDA and the MPN community.  To get more information head to  http://www.mpnresearchfoundation.org/PFDD

Partnering with MPNRF in the Patient Focused Drug Development meeting are the Leukemia and Lymphoma Society, Ann Brazeau’s MPN Education and Advocacy, The MPN Education Foundation, and the MPN Cancer Connection.

The MPNRF Interferon Initiative

iThe MPNRF Interferon (IFN) Initiative s a multi-center project that has brought together internationally recognized experts in both blood and solid tumors to determine how cytokine-driven pathways affect the trajectory of the MPNs, a closely-related group of progressive blood cancers. The collaboration among this group of scientists speaks to their drive to answer these questions:

The Initiative is funded by MPN patients and supporters, a collaborative funding partnership with Cancer Research & Treatment Fund and MPN Alliance Australia, and by generous contributions from PharmaEssentia.

A small grant under the MPNR Interferon Initiaitive was made was made to Dr, Ann Mullaly

: Together with Dr. Steven Lane (Brisbane, Australia) and Dr. Michael Milsom (Heidelberg, Germany), our group is investigating the effects of interferon on disease-causing MPN stem cells to uncover mechanisms of resistance and develop strategies to overcome them. Moving forward, I believe the Interferon Initiative will help provide a strong biological rationale for early intervention clinical trials of interferon in MPN, help us integrate molecular genetic endpoints into these trials with the goal of identifying interferon resistance earlier and modifying our treatment approach to overcome it. In essence, it will enable us make interferon work better and for more patients with MPN.”

 

There’s a lot more going on under the hood of the new MPNRF. An MPN Patient Registry, expansion of publications like the monthly news bulletin, a regular monthly news digest, increased outreach and advocacy projects. For a closer look, head for the source: www.mpnresearchfoundation.org.

 

Take me back to the Contents

© 2019, MPNforum. All rights reserved under Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License

 

 

 

 

 

 

 

 

 

 

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