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…
“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.”
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. .
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
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