MPN BCAM 2013: PATIENTS IN ACTION

    • MPNRF | April 30, 2021

    September 3, 2013

    by Andrew Schafer, MD, Scientific Advisory Board Chair and Chairman of Medicine, Weil Cornell

    Since 2000, the MPN Research Foundation has provided nearly $9 million in research funding to advance the treatment of the myeloproliferative neoplasms (essential thrombocythemia, polycythemia vera and myelofibrosis.) It is a modest amount relative to the magnitude of the problem and the scale of research needed to tackle it. But the Foundation has had a remarkable track record of success in optimally allocating these limited funds to achieve the highest impact for MPNs. In fact, the Foundation has provided key support for virtually every major advance that has been made in the MPNs since 2000.

    Why do we need to act?

    Because without us no one else will. NIH funding gets harder to come by every single year, more so for diseases like MPNs, which are less “glamorous”. But our grants have created the foundation on which researchers have gone on for advanced funding from the NIH to take their projects to the next level. It has also helped launch the MPN research careers of our currently most productive investigators in the field, as well as incentivizing already successful scientists in related areas to turn their attention to curing the MPNs.

    Two steps to accelerating MPN research:

    I.  Get educated

    We think the best way for patients to improve their own outcomes is by educating themselves on the importance of making MPN research a priority. Using the materials included here, tell your friends, family, and neighbors that, like other cancers, the MPNs also deserve attention and funding.

    II. Take action

    These are easy but powerful steps you can take to share your story and improve the outcome of MPN patients everywhere:

    • Be vocal: start a letter writing or social media campaign informing your network of friends, family and associates that you have an MPN and what the research funding needs are. We can help you. 
    • Be active: consider participating or hosting an event, be it a support group meeting or a bike ride to raise awareness or funds for MPN research. Find out how at http://staging.mpnfoundation.org/Get-Inspired
    • Be social: share the MPN by the Numbers infographic “MPN by the Numbers” to illustrate the power patients have to impact their own lives
    • Be a donor: Contribute what you can, whether it’s $10 or $10,000. And consider putting the MPN Research Foundation in your estate plan.