Science & Medicine

Changes and the MPNforum Annual Report

Together, we did it all on $10.86/day.

That was last year.Times have changed.


 

 

 

 

 

 

 

 

The 2018 Annual Report in a Time of Change.

This past year, several MPNforum writers have been named authors in seven papers published in hematology and oncology journals….More than 250 of us created and maintained the largest on-line list of MPN patient recommended physicians…We convened a blue ribbon  international taskforce of MPN specialists, transplanters and SCT survivors to consult on a stem cell transplant warning tool…We created and published the myelofibrosis risk tool on its own website with the support of the MPN Research Foundation. We completed a survey of MPN patient care options and Dr. Robyn Scherber presented the findings from those  2,384 MPN patients in a poster at ASH.  We covered news reports, conducted rare interviews, supported patients, challenged a seriously flawed Jakafi clinical trial, investigated conflict of interest in the MPN environment.  Together, MPN patients, caregivers, and physicians…we did it. And we did it all on $10.86 per day.

A personal note from the Publisher

I’ve been thinking about my next steps within the MPN community. I’ve changed,

Zhenya Senyak

MPNforum has changed, the MPN media universe has changed, and our scientific/medical options have changed.

My changes: The biggest personal change is losing a step or two, something I had to confront this year at ASH. Could be the cancer ridden past couple of years or just simply aging.  Today, with my MF in full suspension and cancer free, I need to refocus, consider how I want to spend these coming months.

MPNforum has changed, mostly in response to changes in the MPN media universe.  In the beginning, we were virtually alone in presenting graphic and photographic images of news, people, opinions, columns. Now pretty much everybody has a web page or a facebook page, Twitter account  etc.  The media has expanded.  Our old beat is now covered by The MPNRF newsletter, Ann Brazeau’s MPN A&E publication — both deeply informative, professional publications. So too are, the videos and newsletters coming out of MD Anderson, the videos presented by Reuben Mesa and Serge Verstovsek. Andrew Schorr’s  Patient Power videos, Claire Harrison’s MPN Voice. etc.  As a result, the Forum has focused more on core strengths:  MPN scientific reporting, patient advocacy and investigative journalism.

The MPN Research Foundation itself has changed. This bedrock source of information and funding lost its founding leader a year ago with the passing of Robert Rosen.

Robert Rosen

Since then, with Barbara Van Husen continuing as Chairperson,  a next generation team under the leadership of CEO Michelle Woerhle has undertaken a series of ambitious initiatives, like the progression marker project and a patient registry.  These changes and MPNRF’s continued high level funding of basic scientific MPN research require support and reporting.

The most exciting, compelling changes are our growing scientific/medical options.  The bulk of industry investment may still be directed toward JAK inhibition but that is being overwhelmed by investments in immunotherapy, gene therapy and genetic interventions and new areas.  Gene silencing and mutational targeting coupled with next generation genomic sequencing and a growing focus on turbo-charging our immune systems will surely replace the stopgap allopathic measures that currently make up our therapeutic options.

In the interim – and that might be three to five years or so – we have a few meaningful long-term therapeutic pathsstem cell transplant and the interferons alone or in combination with other molecules. And our old workhorse, hydroxyurea.

On the table:  2019 MPNforum Goals:  (1) Advancing precision medicine, (2) monitoring clinical trials and medical claims, and (3) supporting patients and  patient advocates with hard data to support interferon prescriptons and back up insurance claims; (4) Reaching out to non-specializing MPN physicians with compelling background information (5) Following gene therapies with objective scientific reporting (6). Supporting patient driven initiatives to address our most pressing needs and (7) Sponsoring online patient/caregiver events to share insights and concerns in a live interactive socially meaningful forum.

Working together we can do all this and more. Please do weigh in with your thoughts, additions, subtractions… ourMPNforum@gmail.com

The Financials – 2018 Revenues

On scant funds and limited human resources, MPNforum has reached its perceivable limits in addressing our new environmentan environment that promises to actually correct the genetic anomalies creating myeloproliferative neoplasms.

What we need are additional resources.

 

 

A few more good people and additional funding. 

You’ve met them in our pages:  A small army of patients, advocates and the very top MPN and stem cell specialists in the world. They consistently donate their time and experience to our community through MPNforum.  We need the next generation of patients to step up and make an equal commitment and join the core group that keeps MPNforum on track.

You can volunteer for an MPNforum Staff Position. You can volunteer for specific jobs or specific times when you can be called upon. The tasks ahead require more resources…and the rewards for your personal involvement are enormous: Access to the people making MPN medical news, interaction with MPN patients and caregivers, and the certain knowledge you’re making a difference in the lives. hopes and prospects of MPN patients.

With you and adequate funding we can complete the Spectrum Stem cell Transplant Timing tool and get it into the hands of those who need it the most. We can support the expansion of interferon research and therapeutic application, advocate for more CRISPR-based hematologic interventions.  We can monitor every registered MPN clinical trial,  review the protocols, interview principal investigators and sponsors and insist on publication of results as mandated by law.

Without you, without more hands on deck and funding to permit vital research and reporting, the simple truth is we can’t undertake many of the tasks facing us in 2019 and 2020.

Honestly, it’s your choice.  It’s really simple as that.

We have no other staff, no other funding.  12,000 or so of us making up MPNforum. And you.

To Donate

MPNforum, PO Box 17142, Asheville, NC 28816
Donations to MPNforum are not tax-deductible

To Volunteer

Select any of the areas below that appeal to you and indicate whether you’re are making an open ended commitment or can  allocate specific times.  In addition, you can volunteer to engage in any aspect of MPNforum creation and production including reporting, proofreading, fact-checking, Internet production. Or simply volunteer and provide a good time to talk about how you might get involved.

1: Research and reporting 2. Monitoring clinical trials and medical claims 3. Providing interferon documentation to patients. 4.  Reaching out to non-MPN physicians.  5. Scientific reporting  6. Coordination of patient-driven initiatives  7. Creation of on-line patient events.

To get the ball rolling and make a difference in 2019, email us: ourMPNforum@gmail.com.  Subject:  Volunteer. (And thank you.)

 

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