Hi, there…
The summer issue of MPNforum Magazine is big. The MPNclinic Index Project alone is 88 pages…plus TSR news reports…and the feature story on Jakafi and Incyte.
We’re publishing on Monday, but for Subscribers’ weekend reading, here’s an advance copy of the MPNclinic story, a single document combining all six MPNclinics with the beginning Index plus Search directions.
You can find it here https://mpnforum.com/six-clinics-index/ now.
Enjoy the weekend, see you Monday.
Zhen
MPNforum Magazine 
Comments on: "Advance Six Clinics" (4)
Dear Zen, A recent comment to the letter told about getting a grant for medication. Do you know how this is done? Joan Fincher
Not really, Joan…but a good place to start would be your healthcare provider. And Incyte’s website set up for that purpose:http://www.jakafi.com/consumer/incytecares Good luck,
Zhen
Hi Zhen
Its been a very long while since I accessed anything MPN – I haven’t been in denial, just decidedly frustrated with my medical professionals and the admission last month that they ‘were a bit slow in joining up the dots’ doesn’t fill me with confidence. After 3 years of drawing attention to a 24/7 headache, the diagnosis on June 6 is ‘superior sagittal sinus and bilateral sigmoid sinus thromboses’, etc, etc.
I read through the MPNclinic project – its a tour de force and invaluable reference point for patients and professionals – and came across the responses given to my question regarding headaches (March 2013). Yesterday, I watched the MPN Advocacy & Education International videos for the Michigan Patient Education Symposium held on May 2. Given the answers I got, I’m just a little surprised to note the emphasis on headaches as an accepted symptom of MPNs and, furthermore, that blood clots in the brain ranks high alongside PE and DVT for those with ET(Dr Laura Michaels, Loyola University Medical Centre).
Perhaps there is an ET/blood clotting article in all this which might benefit the hematologists we rely on for general care and monitoring of MPNs!
I’m considering attending the next symposium in Washington January 8.
How are you? Your workload seems to have increased alarmingly! I’m still working through a backlog of several months. The Quarterly is pretty impressive.
best …
Manuela
Thank you, Zhen! What an invaluable resource tool for us all!
Sheridan Emery
>________________________________ >From: MPNforum Monthly >To: sheridanemery@ymail.com >Sent: Friday, August 16, 2013 10:11 AM >Subject: [New post] Advance Six Clinics > >Zhen posted: ” Hi, there… The summer issue of MPNforum Magazine is big. The MPNclinic Index Project alone is 88 pages…plus TSR news reports…and the feature story on Jakafi and Incyte. We’re publishing on Monday, but for Subscribers’ weekend reading, here’s an ” >