Why MPNforum? Why Now?
MPNforum was organized by friends brought together by the Internet and our common MPN concerns. We felt the need for an MPN community on-line magazine to broaden the MPN conversation, to include deeper discussions using the new media.
It comes at an historic time. As MPN patients or caregivers, we are truly in the crosshairs of two very real revolutions.
One revolution is in the labs, a biomedical revolution where genetic research produces targeted drugs, many now in clinical trial, many more in the pipeline.
The other revolution is played out on our computer screens and smart phones where reports from the front lines of science and greetings from friends are now instantly available to us in color with video and audio clips.
MPNforum is a place for us, patients and caregivers alike, to come together as a community to share in these revolutions.
Last century’s List serve technology that let us type notes to e -mail groups over the Internet was revolutionary for its time and has served us extraordinarily well for more than 15 years. We learned much from each other. Through the efforts of a few dedicated list managers we used e-mail to make friends, inform and console each other. Those lists continue to work a vital beat publishing daily reports from our MPN world.
We are now at the boundary of a rapidly expanding and complex biotech world. Now, as never before, we need to share information with each other freely. We need to discover and evaluate through our own shared experiences the sometimes contradictory information pouring out of labs, corporate offices and clinical trials. We need a forum to come together.
With video and photos and chat exchanges, the Internet enhances our ability to share those experiences…and along the way share the joys and sometimes deep sorrows that accompany them. This first issue of MPNforum is filled with examples.
Most of us knew Karl through the patient support Lists. We admired his grit and humor, his outreach and daily postings of his terminal struggle with MF and then AML. Through the medium of MPNforum we can now experience Karl more fully, see him in a richer context. For those of us who look through these photographs and read his story, his life and legacy become more immediate, his loss more poignant and relevant to our own struggles.
More examples… Dr. Claire Harrison. When her critically important overview of MPNs, “Clinical Impact of Targeted Therapies in Myeloproliferative Neoplasms,” published in Hematology, was made available last month, the news was flashed to our MPN community. The monthly multi-media format of the Forum gives us the space to really look at what she has to say, the time to interview her and bring the story home to each of us….
Many of us followed Chris Harper as he underwent preparation for his stem cell transplant. Where did this all take place? How did he experience the chemo, the recovery? Here he is in living color telling his story…
And what could be more colorful than two old Internet friends, familiar, supportive and occasionally controversial figures, both now regular columnists in the Forum: Dr. Arch, the archetypal family physician and MPN caregiver and Jeremy Smith, our own resident exercise and diet guru. Their support, contributions and encouragement have been crucial from the very beginning.
Because this is our premier issue, the best feature of all is something you can’t find here….yet: Your contributions. We all now have a chance to publish our own stories and photos and videos. We can comment, respond, sound off on news and opinions, propose articles, circulate petitions, plan events.
We can also volunteer and help plan issues, edit, design, proofread and all the rest.
MPNforum may be published only once a month…but the conversation goes on 24/7… with members able to interact directly through its pages, by posting ideas or questions and spicing their contributions with photos, sound clips, or videos.
This is a forum for the entire MPN community.
In these revolutionary times, we need each other to stand up and be heard. And, sometimes, seen.
Subscribers, please do leave a comment. All others: ourMPNforum@gmail.com
© Zhenya Senyak and MPNforum.com, 2011. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Zhenya Senyak and MPNforum.com with appropriate and specific direction to the original content.