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FINAL Spring 2012 News

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FINAL Spring 2012 News spring 2012: volume 18, issue 1 newsletter of the myelodysplastic syndromes foundation TABLE OF CONTENTS From the Guest Editor’s Desk Meeting Announcements 2 A Tribute to American Society of Hematology (ASH 2011) 2 Professor Terence “Terry” John Hamblin 12th International prognosis and published many of the early Symposium on MDS 4 seminal clinical papers defining this disorder. He served with great distinction as co- Oncology Nursing Society 6 Editor-in-Chief of Leukemia Research for From The Foundation 7 26 years. Professor Hamblin was awarded the Worldwide Patient Forums Binet-Rai medal for outstanding research and Support Groups 8 in Chronic Lymphocytic Leukemia (CLL) in 2002 and stated “This has been my most Nursing Perspective 12 successful area of research.” His seminal work on the prognostic value of the IgH gene MDS Centers of Excellence 14 Professor Terence Hamblin mutation status has become a cornerstone in the risk stratification of CLL patients. This Information on Clinical Trials 17 The following statement appeared as a guest editorial prepared by Drs. John M. important research discovery characterized Educational Resources 18 Bennett, David Bowen and Daniel Catovsky, two subtypes of chronic lymphocytic long time professional associates of Professor leukaemia those with or without somatic Contributions to Hamblin in Leukemia Research.1 mutation of the immunoglobulin heavy chain variable region genes. The survival of patients the Foundation 20 With great sorrow we report the death with IgH mutation averages 25 years, if no of Professor Terry Hamblin on Sunday, 8 In Memoriam 22 mutations closer to 8 years. January 2012 from complications of a In addition his contributions in the fields metastatic bowel carcinoma. of apheresis, stem cell transplantation, Born in Worcester, England in 1943; myeloma, antibody therapy, cytokine therapy schooled at Farnborough, Hampshire and DNA vaccines are well known. 1954–62; University 1962–67 and junior Professor Hamblin’s articles numbered doctor posts 1967–74 in Bristol; he became over 200 peer-reviewed publications. In Consultant Haematologist, Bournemouth retirement he embraced the social network, 1974–2003 and Professor of Immuno- writing an eloquent and informed ‘blog’, haematology at the University of Southampton which embraced his varied interests in life 1986 to 2012. He also was Honorary including medicine, sports and religion. Consultant Haematologist at Kings College For those who knew Terry, he will be Hospital, London, 2004–2012. remembered as a gregarious and spirited He was instrumental in the establishment Englishman, ready to step in with an anecdote, of the first three International Symposia on a yarn or a joyful dance at social gatherings. MDS and served on the MDS-F Board of He leaves his wife, Diane–married for 45 Directors and as its treasurer for a quarter of years–and 4 children, Karen, Richard,Angela a century. His achievements in the field and David, and grandchildren. of MDS improved greatly how patients were managed. His group in Bournemouth 1. Bennett JM, Catovsky D, Bowen D. Leukemia developed the first scoring system for Research. 2012;36:383–384. 1 Meeting Highlights and Announcements THE AMERICAN SOCIETY OF HEMATOLOGY 53RD ANNUAL MEETING & EXPOSITION On behalf of the MDS Foundation and our Board of Directors, thank you for joining us for our recent Satellite Symposium: Next Generation Approaches for Evaluation and Treatment of MDS Manchester Grand Hyatt Highlights from 53rd ASH Annual Meeting and Exposition San Diego, California December 9, 2011 The MDS Foundation held its 13th consecu- tive satellite symposium on Friday preceding the American Society of Hematology’s annual meeting. This symposium entitled “Next Generation Approaches for Evaluation and Treatment of MDS,” was chaired by Dr. Stephen D. Nimer of Memorial Sloan- Kettering Cancer Center in New York City and Chairman of the MDS Foundation and its Board of Directors. The room was filled to capacity with an audience of approximately 700 hematologists from around the world. 2 DECEMBER 2011 • SAN DIEGO, CALIFORNIA The MDS Foundation is blessed with a strong and supportive circle of members and friends… Download our ASH Presentations online at www.mds-foundation.org ■ Introduction Presentation: Next Generation Approaches for Evaluation and Treatment of MDS ■ Revised International Prognostic Scoring System (IPSS-R): Developed by the International Working Group for Prognosis in MDS (IWG-PM) ■ Molecular Characterization of MDS & Predisposition ■ Impaired ribosome function and the molecular biology of the 5q- syndrome ■ Combinational therapy and newer agents in MDS ■ Advances in HSC Transplantation for Myelodysplasia: Cord Blood Transplantation & RIC 3 THE 12TH INTERNATIONAL SYMPOSIUM ON MYELODYSPLASTIC SYNDROMES the myelodysplastic syndromes foundation, inc. 4 THE 12TH INTERNATIONAL SYMPOSIUM ON MYELODYSPLASTIC SYNDROMES 5 37TH ANNUAL CONGRESS ONCOLOGY NURSING SOCIETY and support, will provide the tools needed 12:45–1:00 pm by the oncology nurse to support this Setting Expectations for the Initial patient population. Treatment of MDS: Practical Tools THE MDS FOUNDATION PRESENTS The International Nurse Leadership LUNCHEON SYMPOS I UM for Effective Management Board for the MDS Foundation will Treatment triggers and supportive care introduce a supplement to the Clinical strategies: cytopenias, iron overload, Journal of Oncology Nursing which outpatient management incorporates an update on the science Sandra E. Kurtin, RN, MS, AOCN, ANP-C of MDS, practical tools for clinical The Myelodysplastic management of MDS including iron 1:00–1:15 pm Syndromes: Challenges and Strategies overload, a discussion of quality of life in Patient and Family Support for Effective Outpatient the patient living with MDS, and a review Throughout the Continuum of Care Management of strategies and resources for support. Patient and Family Forums — what we learn from our patients May 3, 2012 LEARNING OBJECTIVES 12 pm to 1:30 pm Jayshree Shah, APN-C, MSN, RN, BSN, BS Upon completion of this program, Hilton New Orleans Riverside Hotel 1:15–1:30 pm Grand Ballroom A participants should be better able to: New Orleans, Louisiana • Correlate diagnostic findings and Navigating the Web for MDS: Lunch will be served. The first 350 people will be accommodated. patient specific factors as they relate Web-based Resources for to risk stratification, treatment Patients and Nurses selection and prognosis in MDS. Sara M. Tinsley, ARNP,AOCN • Operationalize strategies to identify treatment triggers, facilitate FACULTY VISIT THE MDS FOUNDATION BOOTH #839 treatment initiation, proactively Sandra E. Kurtin, RN, MS, identify and manage treatment AOCN, ANP-C LUNCHEON SYMPOSIUM related adverse events. Hematology/Oncology Nurse Practitioner On behalf of The Myelodysplastic Syndromes • Identify best practice models for Arizona Cancer Center Foundation and our Board of Directors, we invite outpatient management of the older Clinical Assistant Professor of Nursing you to join us for our Satellite Symposium: adult with MDS including supportive Clinical Assistant Professor of Medicine care strategies. University of Arizona The Myelodysplastic • Discuss the patient and family Tucson, Arizona, USA Syndromes: Challenges perspective relative to living with Jean A. Ridgeway, MSN, APN, MDS and developing systems for NP-C, AOCN and Strategies for Effective active participation and support. Leukemia/Stem Cell Transplant Outpatient Management Nurse Practitioner AGENDA University of Chicago Medical Center May 3, 2012 • New Orleans, Louisiana 12:00–12:05 pm Department of Hematology Oncology Hilton New Orleans Riverside Welcome and Introduction Chicago, Illinois, USA Understanding the pathophysiology of the Sandra E. Kurtin, RN, MS, AOCN, ANP-C Jayshree Shah, APN-C, MSN, RN, disease, risk-adapted treatment selection, triggers 12:05–12:45 pm BSN, BS for active therapies, and strategies for managing Nurse Practitioner – Leukemia Division anticipated disease and treatment related adverse Scientific Update: Recent Advances John Theurer Cancer Center events will provide the oncology nursing professional in Strategies for the Treatment of Hackensack University Medical Center with the tools to assist patients and their families MDS — From Prognosis to Hackensack, New Jersey, USA in meeting the challenge of living with MDS. Treatment Selection Providing the best support possible requires an Updates on the pathobiology of the Sara M. Tinsley, ARNP, AOCN appreciation of the true experience of the patient disease and risk adapted treatment Malignant Hematology Nurse Practitioner and family. A summary of patient and family selection including the IPSS-R H. Lee Moffitt Cancer Center experiences, and identified needs for education Jean Ridgeway, MSN, APN, NP-C, AOCN Tampa, Florida, USA 6 From The Foundation “helping you give hope...” The MDS Foundation is a multi- disciplinary, international organization MDS FOUNDATION PUBLICATIONS devoted to support, research, treatment, The MDS Foundation provides the following ➧ Insurance and Reimbursement and education for patients, caregivers, information to physicians and patients, free Resources for MDS Patients physicians, and other health care of charge: providers. The organization is based ➧ Planned Giving Program: upon the premise that international ➧ The MDS News A Guide to Financial Planning cooperation will accelerate the process ➧ The MDS leading to the control and cure of Messenger these diseases. (Free E-News) Please join
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