International MPN News, Science & Opinion

MPN Clinic Roundtable — to make a difference

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. )

Comments on: "MPN Clinic Roundtable — to make a difference" (9)

  1. Leeya James said:

    WOW! This is the most amazing thing so far! The only thing that can surpass this kind and intelligent feat is when these doctors find our “gleevec”! Many thanks to the doctors and to you dear Zhen!

    Leeya (wife of Eric)

  2. Bonnie q. said:

    Many thanks to Zhen and the participating Doctor’s. What a great help this will be for all of us.

  3. Many thanks for the kind comments…no false modesty, but they’re misplaced. The real gratitude is due first to these brilliant, world class physicans at the top of their form, with families and crushing workloads, who willingly take time out to help us. And then there are all the people who have contributed to MPNforum these past 14 months, making it the kind of patient and caregiver magazine that is worthy of hosting this Clinic. (Now if you want to hand out kudos, I will accept them for the miraculous accomplishment of getting six headshots into that home page layout in WordPress.) Today’s a scorcher. Stay cool!

  4. I agree with all those who’ve already stated their satisfaction that this is happening, but want to double down on Arch’s comment that three times kudos are due to Zhen. Getting this distinguished a panel to respond to questions is nothing short of an extraordinary accomplishment and we all owe Zhen a great debt of gratitude.

  5. MPN Clinic is a great idea, but an even greater accomplishment in bringing it to fruition. A grand example of how much Zhen has done for us and how much his original concept of MPNforum has grown and matured since he began it a year ago. A.

  6. Beatrice Larroque said:

    What a wonderful idea!! That’s fantastic, thank you for making it happen!!!

  7. Wow! How I wish this had happened long ago! What a great idea!! Thanks to all concerned.

  8. Diane Cowan said:

    How absolutely fantastic thank you to everyone.
    Diane Cowan

  9. BonniecEvans said:

    Very impressive group of experts!!!!! This is FANTASTIC!

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