International MPN News, Science & Opinion

November-December

November 15, 2012, Vol. 3  No.3

         The Fatigue Project … MPNclinic… Around the World in 24 Hours….Coming up in 2013…Stories…Features…News

The Fatigue Project....  Fatigue, by far the most common MPN symptom, comes with heavy physical, psychological and social costs. Is there anything we can do about it?   With the help of Dr. Ruben Mesa and others The Fatigue Project  is a beginning. First step is to share our experiences, the strategies and tactics to overcome fatigue.    In this issue, the first 37 patient-derived conclusions and tips from a growing database.   (Read more.) 

The MPNclinic…

Not even hurricane, flood, or the absence of vacationing stalwart Dr, Claire Harrison could keep our Roundtable panelists, led by Dr. Richard Silver’s heroic efforts — and joined by guest Dr. John Mascarenhas —  from their post.  Seven of the world’s top MPN experts provide 86 Responses to 32 questions from patients and caregivers….(Read more) 

Around the World in 24-hours. by Sevy Goulielmos...  MPNforum has been working on an International 24-hour Swim, Run, Ride Event to focus attention on our rare diseases and raise money for research into a cure for MPNs.  Now’s the time to step up, sign up, get your ideas across and help make the difference!.(Read more)  

Ian — A warrior at his post… Even as his options diminish and AML progresses, Ian Sweet continues to post support and advice to his many friends and supporters.  There’s still hope!  Here’s his report from Australia and a tribute..(Read more) 

The “Call me Crazy” campaign works! Here’s whats ahead in 2013.   Keeping things together with duct tape and crossed fingers only goes so far.  Last month’s quick supplemental fundraiser gave MPNforum some operating breathing space… A report on operations and seven objectives for 2013….(Here’s the story)

News Briefs  Christmas Cards from MPD Voice...Now you can support Guy’s and St. Thomas’ Charities MPN outreach  work, spread holiday cheer, MPN awareness and help our UK mates all in one go.  MPD Voice is making available packs of Christmas cards. Photos, order form and details are available here.  but if you’re ordering from outside the UK best bet might be to contact first Gene therapy the answer to correct defective genes? The European Union thinks so.  The EU joins China — which has made gene therapy available for cancer — in approving this revolutionary therapeutic approach.  Produced by the Dutch company, UniQure, the drug, Glybera, treats an orphan metabolic disease by introducing a missing enzyme necessary to process fats.  The company plans to seek US approval next year. Price tag: $1.6 million for a single injection! …. Bayer Healthcare’s Xarelto gets FDA approval for expanded PE role…Last week the FDA approved Xarelto for treating deep vein thrombosis and pulmonary embolism.  Xarelto was previously approved to prevent risk of stroke from certain cardiac events and to reduce risk of DVTs and PEs during replacement surgery….And if the sudden barrage of press releases  is any indication YM Biosciences is ready to make news with completion of its  long-awaited CYT387 JAK inhibitor Phase I/II clinical trials. Full details promised for presentation at the ASH meeting in Atlanta next month, so stay tuned.

Plus What’s Cooking?

Healthy, hearty recipes from the MPN Kitchen click here then dig in for good eating….

…Two Newcomers to Poetry Corner, Elizabeth Goldstein “From the Porch” and L. Rakowski…“The Skin I’m in.”  

“On Tummy Troubles….”

Nathalie Cook’s Food for Thought 

The List of Hematologists... The Catalog of Articles

The November, 2012  Masthead

Tell your story, express yourself, share your experience in your MPN magazine. You can add your comments to MPNForum articles or write your own story or Open a discussion with your…                       Letter to the Editor..

For information 

contact: ourMPNforum@gmail.com

   

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