MPNforum Magazine

What has the Foundation done for us lately?

There are many fronts to the battle against blood cancer. There are many warring factions in the battle against myeloproliferative neoplasms, one of the  most rare of the known blood cancers. 

But there is one – only one – non-profit foundation dedicated solely to the discovery and funding of science to find the cause and cure of ET, PV, and MF.  That’s the MPN Research Foundation.

On the battlefield, we need to know who has our backs and who’s doing the critical work in the trenches. Under president, Barbara VanHusen, the Foundation seeks out young and senior researchers with good ideas, reviews and challenges those approaches, and provides the cash for the most promising to go out and experiment.  

The Foundation doesn’t spend money on drug development, or waste funds on high salaries, PR and plastic bracelets. They invest in science with a laser focus on finding relief from suffering and a cure for MPNs. 

The MPN Research Foundation has a lean, committed staff and uncompensated top executives.  (Robert Rosen the CEO and founder is himself an MPN patient.)  The Foundation is highly efficient is converting donations into research grants.  And in these times of severely restricted US government support for science the need to fund MPN research has never been greater.

Over the years, as Weill-Cornell’s Dr. Andrew Shafer points out, “The MPN Research Foundation has provided key support for practically every major advance in MPN research since 2000.”

Foundation funded research has been the underpinning for many vital MPN drugs – including the raft of JAK2 inhibitors dominating MPN clinical trials in the past four years.

For three years following the discovery of the JAK2 mutation, the Foundation funded the MPD Research Alliance, a collaborative effort  to accelerate preclinical testing of JAK inhibitors.  As part of this alliance, Ayalew Tefferi, with Foundation funding, established the leading biobank for peripheral blood and bone marrow samples from consenting MPN patients.  This biobank has become the indispensable core facility for genetic studies of MPNs by investigators worldwide.

Drivers of contemporary MPN research science:  Ross Levine, Ben Ebert, Ann Mullally, Gary Gilliland, Frances Del Hommeau, Robert Kralovics, Josef Prchal and a leading clinical investigator, Ruben Mesa, have all done significant work funded by the MPN Research Foundation. You can read about it at greater length here.

OK…so what will the Foundation do for us in the future?

It’s up to us.  The MPN Research Foundation has already plowed $9 million into basic MPN research with brilliant results.  It’s not much money by Big Pharma standards, but it’s a ton to the aspiring scientists and researchers in labs worldwide with ideas to test…like reversing fibrosis, a major project of the Foundation. The Foundation is working for us but we have a role.  We can help the Foundation.

Cures? Reverse fibrosis? Genetic breakthroughs?  The Foundation needs funds from us so they can award grants to scientists, physicians, clinicians to find what is needed to conquer all MPN’s. You can make a difference. I urge everyone to donate whatever you can to MPN Foundation. Urge your relatives and friends to send their tax-deductible donation to the Foundation. Tell them WHY.  These grants are giving us hope for a cure! I am Bonnie Evans, the caregiver of Joe Evans, who has had Myelofibrosis since 2008. We are donors. Please join Joe and me.

We can put the Foundation on our Holiday gift list and give something that will generate returns for our whole community.  Or set up a monthly recurring donation, or bequest in the name of a loved one. 

I dream of a cure for MF; but dreaming is not enough.

We all know these rare diseases require dedicated funds and innovative research, if we want to see a cure for MF in the near future.

The MPN Research Foundation has done a great job in leading that effort, but they need our support in raising funds.  We can do more than dream; we can act and we can invest in our own future.

Please join us this in this effort, however you can.– Charles Nielsen

We have to get realistic about fighting MPN blood cancer…and supporting the Foundation, our major ally in this bloody war, You can take the first steps by starting your holiday gift program, right here with a generous gift to the Foundation.

Questions? Contact the MPN Research Foundation or MPNforum’s Foundation Gift Program Coordinators Bonnie Evans  or Charles Nielsen at ourMPNforum@gmail.com