Science & Medicine

A Birthday Party Invitation…

We’re having a birthday
party…and you’re invited!

April, 2011, our baby was born. MPNforum …. The first monthly magazine for our MPN  patient and caregiver  community– is now One Year Old!

  Sure, we’re proud…Editors, writers, readers,subscribers, look what we’ve done together.

In our first year MPNForum covered the major events affecting our community, published scientific findings hinting at drugs soon to be in the pipeline and opened a forum where all MPN patients, caregivers, scientists, investigators and hematologists can come together and share their experiences.

To celebrate, we’ve got a present for you.

Over the year we published…

…. Think pieces on the history of myeloproliferative disease and some of its key scientists and support groups…

…. Investigative articles into the first presentation of Ruxolitinib’s successful Phase III clinical trial with interviews with Dr. Ruben Mesa, Dr. Srdan Verstovsek and Dr. Claire Harrison, key investigators in the COMFORT I and COMFORT II trials.  We aired Dr. Ayalew Tefferi’s concerns over Jakafi and supplied video and transcripts and links to both his issue and the data and charts presented to the FDA.

…. Analysis of the 23andMe MPN DNA offer, interviewing company officials, scientistists,  FDA examiners, and following up by publishing the results from one patient’s participation.

….. Features, photographs, videos,  graphics and stories of MPN patients globally, our struggles and solutions, love stories, art, poetry, advice, problems, triumphs.

…. Inside, in-depth looks behind the doors of research laboratories – spotlighting, among others,  the work of Dr. Katya Ravid and LOX inhibitors,  and MPN Research Foundation funded work being done by  Dr. Shaoguang Li on the PV pathway, Dr Ross Levine and Dr. Ben Ebert, searching out genomic clues to the source of our MPNs.

…. A publicly available list of patient-recommended hematologists..  (The List– recommended by our blood brothers and sisters —  includes many who have made themselves available to talk about their recommendations.)

 Over the past 12 months, we shared the joys of recovery and remission the sorrows of friends passing, Sam, J.D., Karl, Annette, Charlotte and so many others.

But mostly, by all of us coming together, we opened a pathway for every MPN patient and caregiver to access information and share their experiences freely.  By introducing new faces and bringing old friends into clearer focus, hopefully we’ve made a beginning at strengthening our MPN support community.

 Now, the board, the editors, the writers, subscribers and volunteers — along with the 80,000+ visitors to our stories, articles, and columns — look forward to our second year.   

Thank you! For our birthday present we prepared a neat package of our first year all wrapped up right…   HERE!  






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