April 8, 2014 The primary use of Pegasys over the years has been for the treatment of Hepatitis C. However, in recent months new drugs have been approved for Hepatitis C which will change the standard of care for many or most of these patients. Many MPN patients who use Pegasys have been concerned that… Read More »PEGASYS UPDATE
Geron has been given verbal notification from the U.S. Food and Drug Administration (FDA) that its application for imetelstat has been placed on full clinical hold, affecting all ongoing company-sponsored clinical trials. A full clinical hold is an order that the FDA issues to a trial sponsor to suspend an ongoing clinical trial or delay… Read More »GERON IMETELSTAT TRIAL PUT ON HOLD BY FDA
March 2014 An Open Letter to the MPN Community in the United States (Originally published at MPNForum) By Hans Hasselbalch, Roskilde Hospital, Professor, Department of Hematology,University of Copenhagen Dear Friends, Colleagues and Patients… About 25 years ago recombinant interferon (IFN) was used successfully for the first time in the treatment of essential thrombocythemia and a… Read More »From MPN Forum: An open letter on interferon
February 6, 2014From MPN Focus, a newsletter from the Clinical Research Center for MPNs at MD Anderson Cancer CenterBy Kate Newberry & Srdan Verstovsek The JAK2V617F mutation is the most prevalent gene mutation among patients with myeloproliferative neoplasms (MPNs), and its discovery led to the development of JAK inhibitors, which have transformed the treatment landscape… Read More »JAK INHIBITORS AND JAK2 MUTATION: WHAT’S THE CONNECTION?
February 4, 2014 A petition spearheaded by the Zebra Coalition, brought together by MPNforum, asks that the FDA require a Patient Advocate be available at every Investigative New Drug clinical trial site to provide a needed level of Patient safety. The Patient Advocate would be empowered to communicate directly with Patients and with Investigators on behalf… Read More »ZEBRA COALITION PETITIONS FDA
On January 13, 2014 The MPN Research Foundation sent its Deputy Director Michelle Woehrle and MF patient Patrick Corcoran to OVAC’s annual meeting to advocate on behalf of people living with PV, ET, and MF. The goal of the meeting was to review Legislative Outreach strategies for 2014 and review funding requests OVAC and member… Read More »MPNRF ATTENDS ONE VOICE AGAINST CANCER’S ANNUAL MEETING
January 20, 2014 House and Senate Appropriations Chairs Hal Rogers and Barbara Mikulski released their FY 2014 omnibus appropriations bill last week. Based on a baseline FY13 budget of $28.9 billion, the NIH receives a $1 billion increase in the omnibus (3.5 percent), bringing the NIH budget to $29.9 billion in FY14. Over the past… Read More »HOUSE AND SENATE APPROPRIATIONS INCREASE FUNDING FOR NIH AND NCI
December 10, 2013 MPN Research Foundation grantee Robert Kralovics was one of two labs to discover a new genetic mutation that accounts for most of the cases of JAK2 negative MPN patients. Reporting at ASH’s Annual Meeting, Dr. Kralovics revealed the discovery of the Calreticulin, or CALR, mutation in 73% of MPN patients who do… Read More »2013: CALR GENETIC MUTATION DISCOVERED FOR MPN
December 3, 2013 As you may have heard, a clinical trial of PRM-151 in patients with myelofibrosis, including primary MF, post polycythemia MF, and post essential thrombocythemia MF is now open at the centers listed below. PRM-151 is a pharmaceutically produced form of Pentraxin-2, a naturally occurring protein that plays a role in the body’s… Read More »PRM 151 RECRUITING MF PATIENT
Giving is as important as receiving during the holiday season. This season has not been easy…a typhoon hit the Philippines, deadly tornadoes in the Midwest and snow in the West and East coast. Many people are worried about the economy and jobs. #GivingTuesday on Tuesday, December 3, was a chance to focus on the true… Read More »THANK YOU FOR GIVING TUESDAY 2013
