..the MPN community's hometown paper

MPNRF: Research for a Cure

(The MPN Research Foundation has done an extraordinary job in discovering and funding basic scientific work that is changing the MPN landscape — from JAK2 inibitors to basic genomic research. We asked Barbara Van Husen, president of MPNRF to give us a perspective on what’s happening day to day at the Foundation. Here she is joined by associate, Michelle Woehrle.)

by Barbara Van Husen

Spring has come to (and may have already left) Chicago, and life in the office of the MPN Research Foundation gets busier every day. As a patient-funded organization we rely on the MPN community of patients, caregivers and doctors. Since you, make this research possible, we are always happy to report to you and hear from you.

April 1 was an important day for us, as two of our grant-making initiatives marked important steps forward.

New and Established Investigator Grants Reach Year One Review

 The research grants we awarded in February 2011 reached their Year One review at the end of March.  Each of the researchers  provided the Foundation with progress reports on their first year of funding. After review by our Scientific Advisory Board  we are pleased and proud to renew all  six grants for a second year of funding.

The MF Challenge:  Proposals Are In

 In January, 2012, the Foundation issued a Request for Proposals (RFP) for innovative research projects aimed at stopping and reversing bone marrow fibrosis in MF patients.  The objective of this initiative, which we call the MF Challenge , is to change the prognosis for patients with myelofibrosis.  We want to make ‘concept grants, funding new avenues of research in MF.

The RFP went to hundreds of researchers and research institutions, and by the April 1 deadline, we received 23 proposals from researchers in theU.S.and across the world.

Our first step in reviewing these proposals was a busy one-day effort to collect, collate, copy and file the proposals.  The full set then went to Drs. Andrew Schafer and Michael Kurman, representing MPNRF and our MF Challenge partner the Leukemia & Lymphoma Society (LLS), who will review the proposals for compliance with grant guidelines.  Proposals which meet our guidelines will then be discussed and scored by the review panel meeting face to face as a group on June 1.

ASCO Comes to Chicago

Every June Chicago hosts the annual conference of the American Society of Clinical Oncologists, a major cancer research meeting.  Although blood cancers are only a part of this conference (in contrast to the ASH meeting which happens in December), the ASCO conference brings major blood cancer researchers and many biotech and pharmaceutical companies to the city, providing us with an opportunity to hear scientific updates, have face to face meetings with MPN scientists, and meet with potential industry partners.

This year we will begin the ASCO weekend meetings by holding our MF Challenge Proposal Review Session at the LurieCancerCenterat NorthwesternUniversity.  For the next several days, we hope to meet with many members of the MPN science community, and will publish a summary of what we learn on our website and through channels like MPNforum.  We look forward to learning the most current updates on clinical trials, basic research, and other developments and sharing them with you all.

by Michelle Woehrle

 “And then there’s charitable registration at the Foundation…”

As usual, things are heating up in the MPN Research Foundation offices. After a winter spent reflecting on our grant strategy and plotting next steps for advocacy we’ve been busy this Spring with the usual of grant progress reports, newsletter prep and sending out information to patients who request it.

Tax day is looming for us in the United States. But for MPN Research Foundation, taxes have been filed for about a month now.  Think you have it bad? Try living with your accountant for two days straight in order to file your taxes, because that is exactly what non-profits must do to fulfill auditing requirements.

But the fun doesn’t stop there. The good times are just getting started for us as, once our taxes are filed and audit report signed, sealed & delivered we next launch into making sure we are registered to solicit donations throughout the U.S.

This process entails:

  • Check with each state to see which department handles charitable registration (varies from state to state but can include Department of Law, Secretary of State, Treasurer)
  • Find out how they want the application submitted (online, mail, fax, paper plane)
  • Fill out the forms themselves (including describing how funds will be used in the state)
  • Pay the fees (obviously, the states with the lowest populations have the highest fees)
  • Notarize, sign, mail, rinse, repeat

No, I’m not kidding, and we must do this for each state that requires it (some don’t) in order to raise even $1 there.

If we didn’t,  we have the choice of either (a) not accepting donations from anyone in that state or  (b) risk fines for not complying. Given that our sole purpose is to fund MPN research that would not be done otherwise, and that these funds come from patients all across the U.S. (and the world), we find keeping compliant with the state charitable registrations a necessary evil.

This delightful task has been passed along from person to person as part of their larger role at MPNRF. I myself did it for 2 years before handing the ink and white-out baton to Juliana, who has the dubious distinction of being our current Czarina of registrations. Jules is thrilled to have the chance to work so closely with state government.

I imagine on the other end  – in offices in Kansas, New York, Hawaii and Indiana – there are state employees also tearing their hair out over the flood of applications they are fielding right about now. Although the task can conjure frustration in the most patient and clerically minded person, the process of registering a charity for solicitation in each state does serve a purpose.

In theory, anyway.

Assuming the applications are actually reviewed it serves a purpose in keeping charities honest and transparent, which is necessarynow more than ever.

Take me back to the Contents

© Barbara Van Husen, Michelle Woehrle and MPNforum.com, 2012. Unauthorized use and/or duplication of this material without express and written permission from the authors and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to authors and MPNforum.com with appropriate and specific direction to the original content.

Comments on: "MPNRF: Research for a Cure" (3)

  1. Thank you, Michelle and Barbara for your enlightening articles. Although we each have our personal charities, you broaden the list of MPN foundation’s “true believers” with your stories of short exciting busy days and the long boring yet always necessary days that you work for us. I, for one, will be a lot more circumspect and a bit ashamed of myself if I should (mis)use the “Inordinate Salaries” or “The Little They Do” of executives and employees of non-profit advocacy foundations as a false excuse for not contributing. Arch

  2. Thanks for the incredible work you do in the Foundation – what a difference you have made by supporting this research! I got a kick out of your registration woes, Michelle. I work for a not-for-profit and the paperwork for registration – and for lobbying – seems ridiculous at times. Makes me want to fill out some of the blanks with nursery rhymes just to see if anyone is checking…

    • LOL Ellen. If you ever succeed in getting a nursery rhyme through do let me know. It can be a struggle to take it seriously. Glad to shed some light on one of the tasks that is necessary to fulfilling our larger objectives.

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