Just wanted to check in and give Subscribers a few updates on MPNforum as the summer ambles on its torrid way. (Actually it’s raining cats and dogs in Western North Carolina right now and every flea east of the Smokies has descended on my poor animals; I think they’re feeding on Advantage.)
The big news continues to be MPNclinic. Medscape picked up the announcement news release and dozens of patients from (so far) the US, Canada, UK, and Australia have responded with questions.
If you have any MPN questions, this is the place to get some answers from the best in the business, quickly and conveniently. Just e-mail firstname.lastname@example.org and we’ll log it in and get it over to the docs the same da (please include your general location). Although publication of the MPNclinic special section is monthly, answers are sent to patients as they arrive. Most participating doctors have already responded and the special monthly section is taking shape.
A new person, Mary Morochnick, is coordinating the project for us. She’ll introduce herself properly down the road, but she’s already doing a great job of logging in questions, acknowledging requests and keeping track of responses. Send in your question and you’ll hear from her..
The Jakafi experience
We’re turning our attention to the practical side of Jakafi, the MF wonder drug approved late last year by the FDA. If you’re on Jakafi and want to share your experience with other patients and caregivers, please get in touch with me (email@example.com) It’s been six months and we’ve been building up a body of actual experience to compare notes and share realities.
Too early to talk about…but remember you heard it here first. A great new cross border fund-raising project to help our friends at the MPN Research Foundation pump up their MF Challenge is in early discussion stages. (And in case you missed their announcement there’s now a description of some of the newly funded MF Challenge projects. Check it out. This is the stuff that cures are made of.
We’re still on vacation, of sorts, seeing kids, fighting poison ivy, retreating from fleas, and taking some time for long walks, good music, and reading books. And if any of you want to start an on-line Book Club for the Forum let me know. Lots of us are addicted to reading. Which reminds me….
Be well, enjoy the weekend , happy trails,
Comments on: "Summer Daze Update" (1)
Absolutely love the new feature wherein members are able to pose questions to recognized professionals in the MPN field. What a magnificent opportunity to pick the right brains! As a PV patient who is on a constant search for valid information about our very rare diseases, I want to express my sincere thanks for all of the efforts that made this and so many other wonderful features possible. Take good care and may God bless.