International MPN News, Science & Opinion

MPN Action — Community and Cooperation

Hats off to a group that helped launch an on-line referral source and the MPN community action program.

 It started with an on-line Skype meeting last summer…
  
popup skype party
That’s about the time we all decided to put on hats.  Cheryl easily won whatever doorprize there was with her blue velour cap sporting buffalo horns. Julie had a cool fedora and the rest of us pretty much grabbed what we had laying around.”

MANet logo

It started a year ago when one of our friends needed financial help covering her stem cell transplant expense.  That’s when  the MPN Support Community (www.mpnsupport.com) came together.  The idea was to gather the many services available to fill the range of patient needs from  drug co-pays, advocacy in clinical trials, appeals of insurance denials, travel, lodging etc.   

The MPN Support website was one vitally needed service but once organized, cooperatively, the group realized its cooperative work could help power  action on a variety of MPN patient issues.  And clinical trial reform was at the top of the list.

The assembled group —  a gathering of patients and caregivers from many MPN organizations, email support groups, foundations, Facebook pages — voted to organize the MPN Action Network as a non-profit organization.

In all, 19 people came together, helped define the most needed services and produced the MPN Community Support website.(www.MPNsupport.com) including Diane Blackstock,  Mary Cotter,  Jane Frantz,  Michael Goldstein,  Ellen Jacquart,  Charles Nielsen,  Raquel Nunez,  Robert Rosen,  Kathy Vanmeter, and Barbara Van Husen and a Charter Board with Dr. Renee Blumstein,  Susan Hill,  Bob Libon,  Julie Libon,  Marina Sampanes Peed, Cheryl Petruk,  Diane Rose,  Zhenya Senyak,  Jeremy Smith, and Michelle Woehrle

In the the Action Network settled on two initial objectives:

(1)  Advocate for MPN patients and strengthen the MPN Community Support website (www.mpnsupport.com), building  a common, well-publicized, open source, international web-based resource for MPN patients, caretakers and physicians.  This could provide the whole MPN community with instant referrals and provide a platform for MPN patient advocacy.

(2) In collaboration with other individuals and organizations, work for radical reformation of the clinical trial system, making it more transparent, productive, and responsive to patient needs and safe, rapid development of effective drugs. .

claire ash vidRuben Mesa on ASH 2015Serge smileRichard Silver MD

 

 

 

 

Four of the MPN community’s strongest allies,  leading MPN specialists among hematologists, have joined The MPN Action Network as medical advisors:  Dr. Claire Harrison, Dr. Ruben Mesa, Dr. Srdan Verstovse and Dr. Richard Silver.

The MPN Action Network is open to all MPN patients, caregivers, and physicians.

Questions:  info@MPNaction.org or MPNsupport@gmail.com

 

Take me back to the contents

© 2016, MPNforum, All rights reserved under the Creative Commons Attribution non-commercial-no derivs 3.0 unported

Comments on: "MPN Action — Community and Cooperation" (1)

  1. Bonnie Evans said:

    Thank you for all those who contributed and offered their time building this site.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: