THE MPD VOICE NEWSLETTER

What is the MPN Voice?
MPD VOICE is a printed newsletter published by the MPN Education Foundation.  The editor,  PV patient and patient advocate Joyce Niblack  ian.sweet@homemail.com.au, was editor of the original MPN VOICE newsletter published by Dr. Harriet Gilbert’s MPN Research Center.  Unfortunately, the Center’s operations ceased when Dr. Gilbert died.  Joyce has continued the information, education and support functions through the MPN Education Foundation. 

As part of this effort,  the MPN-net online support group led by Joyce has been used by MPN experts to accrue patients for clinical trials and to learn more about how MPNs affect quality of life.  The first clinical trial announced on MPN-net was a Harvard/Dana Farber Study lead by D. Gary Gilliland, MD, PhD in which patients filled out a survey,  and provided blood and dna samples.  This led to the finding that a high proportion of PV patients and some ET and MF patients express a mutation in the JAK2 tyrosine kinase which may be the equivalent of the bcr-abl tyrosine kinase found in CML patients and which led to the targeted therapy for that disease, Gleevec. 

The first issue of the MPN Education Foundation’s MPN VOICE newsletter is devoted to this stunning development and its implication for non-CML  MPN patients.  For a complimentary copy,  email your request and with mailing address to ian.sweet@homemail.com.au

When Is It Published?
MPN VOICE is a quarterly publication.  The fall issue will focus on myelofibrosis with articles by Dr. Ruben Mesa of Mayo Clinic (Rochester, MN) and Dr. Srdan Vestovsek (MD Anderson, Houston,  Tx).  Both were speakers at the 2005 Mayo Clinic Comprehensive Cancer Center/MPN Education Foundation  patient conference.  The winter issue will report the findings of the ongoing Mayo/Harvard/MD Anderson quality of life survey discussed under the Clinical Trials,  MPN News,  MPN-NET and MPN Education Foundation sections of www.mpninfo.org