News & articles

June 4, 2014 Haematologica recently published a thought-provoking article by Drs. John Mascarenhas and Ronald Hoffman of Mt. Sinai, Dr. Ruben Mesa of the Mayo Clinic, Scottsdale, and Dr. Josef Prchal of the University of Utah, (Optimal therapy for polycythemia vera and essential thrombocythemia can only be determined by the completion of randomized clinical trials)… Read More »THE CRITICAL IMPORTANCE OF CLINICAL TRIALS

June 4, 2014 Haematologica recently published a thought-provoking article by Drs. John Mascarenhas and Ronald Hoffman of Mt. Sinai, Dr. Ruben Mesa of the Mayo Clinic, Scottsdale, and Dr. Josef Prchal of the University of Utah, (Optimal therapy for polycythemia vera and essential thrombocythemia can only be determined by the completion of randomized clinical trials)… Read More »THE CRITICAL IMPORTANCE OF CLINICAL TRIALS

May 21, 2014 MPN Advocacy and Education International is searching for Vietnam Veterans who were exposed to Agent Orange and now have a diagnosis of Myelofibrosis, Polycythemia Vera, or Essential Thrombocythemia (Myeloproliferative Neoplasms-MPNs). This information will be collected in an attempt to add myeloproliferative neoplasms to the US Department of Veterans Affairs ‘presumptive’ list of conditions… Read More »STUDY ON VIETNAM VETERANS WITH MPNS

This ride is in memory of the late Al Bolea who lost his gallant fight against Myelofibrosis on September 23, 2005. Al was the co-founder of the Charles River Wheelmen (CRW) and had a profound effect on the people around him. He showed them the importance of valuing and welcoming each person; that riding is… Read More »ANNUAL AL BOLEA MEMORIAL RIDE

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