MPNforum Magazine

Together, we can make a difference.  Right now.
What started months ago by understanding the Crisis in MPN care, evolved into the determination to do something about the unserved and underserved 97% of us suffering from MPNs.

That number may not be precise, but the problem is.

Reliable medical MPN knowledge comes only from those trained in hematology, familiar with biotechnology and science and deeply experienced in the clinical care of MPN patients. But there are so few physicans trained, skilled and experienced in MPNs —  and they are generally clustered in large cities and remote medical centers — that we turn to less reliable sources to weigh our options.

Myeloproliferative neoplasms are complex and still largely mysterious. They are also rare enough that even hematologists don’t see enough of us to qualify as experts.  Our family doctors do the best they can but unless a CBC sends clear signals of myeloproliferation, how are they supposed to know what they’re looking at? And that doesn’t begin to consider the worldwide populations of patients and healthcare providers without access to current MPN knowledge.

MPN Clinic — What’s Darwin Got to Do with It?

At the heart of Darwin’s idea of Natural Selection is a driving concept that powers and shapes generations of all species:  Survival of the fittest.

The fittest rarely means the strongest and fastest. The fittest are those selecting successful strategies  based on knowledge. They avoid the worst hazards, grasp promising opportunities and live to pass along their DNA.  Our MPN environment is filled with hazards and opportunities.

 In the long run, MPN knowledge may not be able to save our lives, but can certainly help us select the best options available to us.  Ignorance, on the other hand,  can– and has – killed us. 

Finally, with the generous support of the most qualified of MPN specialists, we can improve our survival odds.
 

September 15, MPNforum Magazine is launching MPN Clinic , a monthly roundtable of distinguished scientists, hematologists and clinical investigators will provide  clear and trustworthy responses to MPN questions to patients, caregivers, and healthcare providers..

Our initial roundtable includes renowned experts from six prestigious institutions: Dr. Richard Silver (Weill-Cornell),  Dr. Srdan Verstovsek (MD Anderson), Dr. Ruben Mesa (Mayo Clinic), Dr. Claire Harrison (Guy’s and St. Thomas)  Dr. Ross Levine (Mt. Sinai/Sloan Kettering), and Dr. Jason Gotlib (Stanford).

 Here’s how it works:  Questions about any MPN issue may be sent to the Project Coordinator at MPNclinic@gmail.com.  All questions will be forwarded to every participating specialist.   Each doctor will respond to one or more questions and those responses will be circulated among the physicians for discussion.

The final version –Questions and Answers — will appear in the monthly MPN Clinic, a separate section of MPNforum, and will be archived in a searchable on-line database and made freely available to MPN patients, caregivers, and healthcare providers. Answers to your personal questions will be sent to you as they arrive.

 You can submit your questions now in confidence  to MPNclinic@gmail.com.  (When published, you will be identified by initials and general location only.) This is our chance to pool our concerns, get the best possible information available and build our common knowledge base.

 It all begins when you send in your questions.  MPNclinic@gmail.com  

(You can help reduce turnaround time by  keeping your questions brief and specific, supplying only enough detail for the doctors to respond.  Please be sure to include your general location. Thank you. )