spring 2008: volume 13, issue 1

newsletter of the myelodysplastic syndromes foundation

From the Guest Editor’s Desk Flow Cytometry: Providing Additional Information in Diagnosis, Prognosis and Monitoring Treatment of MDS

simultaneously along with light scattered by the cells as they traverse the laser light at rates of 500–1000 per second. The data generated by the flow cytometer can be analyzed by correlating the intensity of each dye along with cell size and cell granularity on each individual cell, Denise A. Wells, MD resulting in an identifying phenotype for that Contents Michael R. Loken, PhD cell. The cell surface proteins or antigens detected by monoclonal antibodies are the From the Operating Director’s Desk 5 Hematologics, Inc. Seattle, Washington final translated products of genes which are Young Investigator Grants Program 6 highly regulated during maturation from Flow cytometry is only beginning to be Foundation Initiatives 7 hematopoietic stem cells found in the bone used to study patients with MDS. We would marrow to fully functional mature cells Meeting Highlights/Announcements 8 like to provide background and an overview observed in peripheral blood. With proper of technology, and its basis for assessing Patient Services 11 selection of antibodies, and a careful multi- patients with MDS which will have dimensional analysis, it is possible to identify Patient Forums and Support Groups 12 increasing importance in the near future in every cell in a marrow aspirate specimen, Living With MDS 13 being able to separate MDS from other classifying it to a lineage and a maturational causes of decreased blood counts. stage within that lineage, and assessing Drug News 15 whether or not it displays a normal or an Patient Registries and Referrals 17 Flow Cytometry: abnormal phenotype.1,2 A 30 Second Primer MDS Centers of Excellence 18 Hematopoiesis (the production of blood The technology of flow cytometry cells) can be described as a series of Information on Clinical Trials 21 discriminates between different types of steps with progression from one stage to Educational Resources 25 blood cells based on the quantitative the next characterized by multiple “intensity” amounts of unique proteins (and some changes in antigenic expression identified Foundation Publications 29 sugars) found primarily on the cell surface. by different antibody/dye combinations. In Contributions to the Foundation 30 These proteins are recognized by specific normal developing bone marrow cells, the antibodies, each labeled with a different constellation of antigens and their relative In Memorium 31 colored fluorescent dye. By incubating the intensities are highly regulated. The changes General Information 36 cells with the specific monoclonal observed in antigen intensities represent antibodies, only the cells which exhibit the stepwise changes in gene product target protein become tagged with the expression that mark developing cells fluorescent dyes. The amount of dye is progress to the next stage. These stages of directly related to the amount of the specific normal hematopoietic cells are established protein on that cell which can be detected in fetal life, are invariant with age and by the flow cytometer as the cells pass remain intact in stressed or regenerating single file through a laser beam. Multiple bone marrow, following chemotherapy and dyes of different colors can be detected even after stem cell transplantation.

1 Phenotypic Changes in which antigens are present on each lineage, Flow cytometric analysis (focusing on MDS Bone Marrows at each maturational stage, and how their normal/abnormal blasts, myeloid and expression is related to other cellular monocyte development) can be a compli- Once the patterns of gene product antigenic markers. Multiple studies have mentary addition to a morphologic analysis expression during the development of shown that the multiple antigenic profiles, or of bone marrow in facilitating an accurate normal blood cells were elucidated, a “phenotypes,” of bone marrow cells in comparison to the patterns on leukemia diagnosis. Dyspoietic features in the patients with MDS exhibit differences from cells showed that these neoplastic cells did erythroid and megakaryocytic lineages are the patterns identified in normal bone not match the normal relationships. Every often prominent by morphology, whereas the marrow, not only among the blast cells, but leukemia analyzed by flow cytometry was assessment of abnormal myeloblasts, also on the maturing myeloid cells and found to be different from normal and maturing myeloid cells and especially 3-12 17 different from other similar leukemias, i.e., monocytes. The variability in published monocytes, is more difficult by morphology. the intensities and relationships between reports on flow cytometry in studying MDS is Flow cytometry, however, focuses on these antigens (the leukemic phenotype) were due, in part, to the uniqueness of each maturing leukocytes. Together the two unique to individual patients. The differences patient and which antibodies are used to technologies can provide a better total picture in intensities of antigens on the leukemia as distinguish between the normal presentation of the bone marrow in MDS patients. At compared to normal cells provided a “tumor of antigens and those observed on each present, technical considerations limit the specific marker” that can be used to monitor unique patient. analysis of erythroid and megakaryocytic response to chemotherapy and to detect Because of the extensive variability from cells by flow cytometry. residual disease following treatment. patient to patient as well as the changes that occur over time for an individual patient, Identifying, Enumerating and The flow cytometric assessment of acute Classifying Blasts (and chronic) leukemias consists of single specific antigenic changes are not Flow cytometry has a distinct advantage evaluating the major, usually homogenous, sufficient to fully capture the abnormalities 13,14 over morphology for blast cell enumeration neoplastic cell population. When used in a present. The abnormalities observed are diagnostic role for unexplained cytopenias in not just in the expression of single antigens because of the ability to count many more suspected MDS, the manner in which the but affect the relationships between multiple cells (10,000 –100,000 or more as technology is applied changes. Instead of antigens. Hence, a multidimensional approach opposed to 300–500 cell analyzed by detecting a major abnormal immature cell is required to relate all cell proteins to microscope) and a definable set of cellular population (found in leukemia), the approach each other. This analysis must distinguish characteristics that can be used to identify becomes a search for a more subtle between a stressed normal marrow (with an the cells, and is potentially less subjective abnormality causing, or related to, the increase in more immature forms called a than morphologic criteria of defining what inadequate production of hematopoietic shift-to-the-left) from a true uncoupling of constitutes a blast. Since several different cells resulting in the cytopenia. This requires the co-regulation of gene products as combinations of antibodies can be used to evaluation of subsets of abnormal cells such evidenced by abnormal antigens present in discriminate the myeloblasts, it has been as monocytes, maturing myeloid cells, and neoplastic processes that may occur at any recommended that a phenotypic blast count myeloblasts present in the bone marrow as of the developmental steps.5,15 should be obtained using multiple the abnormalities in protein expression are In addition to abnormal increase or combinations of antigenic markers, found not only on the immature cells (blasts) decrease in intensity of antigens, the types comparing the results for consistency and but also on the more mature cells. In this of abnormalities observed in MDS include as an internal quality control check of the manner, flow cytometric data for MDS must inappropriate lineage expression (lymphoid data.5 When applied to MDS, the be used in the same way as a morphologic antigens on myeloid cells), asynchronous identification and enumeration of blasts review of an aspirate smear, comparing the expression where antigens normally must incorporate the multiple antibody features of normal (non-neoplastic) bone identified on immature cells appear on combination approach since the process of marrow elements to their neoplastic mature cells, and complete absence of neoplastic transformation may involve the counterparts. In a morphologic analysis, antigen expression (possibly due to loss of one or more of the antigens used to each lineage is examined to determine the complete loss of the gene, regulators, classify the cells as immature. The use of frequency of cells, the degree of maturation, or over-inhibition).16 Other abnormalities 3 or more combinations of antibodies to and suspected abnormalities observed detected by flow cytometry can be observed. define a flow cytometric blast provides a relative to previous knowledge of cytologic Physical changes of cell size and decreased redundant system with internal controls for appearance. Likewise, a flow cytometric cellular granularity are often observed in the loss or inappropriate expression of any approach requires an intimate knowledge of MDS marrows. one of the markers. Flow cytometric blast

2 counts are expressed as per non-erythroid Scoring System (IPSS)19 score indicating the These quite different studies suggest that cell, i.e. per CD45 positive cell, because of number of abnormalities was related to accumulation of expressed phenotypic abnor- the requirement to remove erythrocytes decreased neutrophil production and to malities is a distinct, independent parameter from the analysis. other, well documented clinical findings (i.e., for assessing patients with MDS that may In addition to being able to count blasts, a karyotype, number of cytopenias, and blast further subdivide the heterogeneous group precise phenotypic analysis distinguishes count). The scoring system was useful in of patients with respect to clinical outcomes. distinguishing normal/stressed marrow normal from abnormal blasts not only for Monitoring Treatment higher blast counts but also for blasts less control patients from MDS patients. The flow than 5%. A study of low grade MDS score was also highly correlated to the A bone marrow analysis in MDS is an comparing the phenotype of only the CD34 relapse rate and survival post allogeneic observation at any given time point and positive cells (progenitor cells) showed that SCT. Moreover, patients with an Intermediate reflects the kinetics of what is happening to over half of the patients with morphologic 1 category by IPSS were further stratified by maintain the status of the cells in the blasts less than 5% showed phenotypic the flow score with significantly worse periphery. In MDS, there may be neoplastic abnormalities.8 Similar results were obtained prognosis post transplant than those populations that are surviving, or cells that in separate studies in which abnormalities on observed with the higher flow scores. This are undergoing programmed cell death or the blast population (defined in study suggests that the amount of apoptosis. A neoplastic clone may be able to multidimensional space) were also found on a dysregulation in gene product expression suppress normal cells either by increasing majority if not all of cases, independent of the (number of antigenic abnormalities) their numbers or by becoming over or under maturing myeloid cells.17,18 The detection of correlates with more severe disease and sensitive to growth factors or cytokines abnormalities on the myeloblast population, that the extent of dysregulation may be an expressed by lymphocytes and macrophages even at low levels, is clear sign of some entirely independent parameter apart from present in the marrow. In addition, neoplastic transformation or genetic dysregulation and the features included in the IPSS. cells may achieve immortality by escaping may identify patients with unexplained The notion of accumulated dysregulation immune surveillance. cytopenias as having MDS. has been extended in a multicenter study of At later time points, there can be any permutation of the cell populations previously Measuring Phenotypic Dyspoiesis recently diagnosed patients with MDS using similar panels and based on the above observed, particularly with treatment. With Since no single antigenic abnormality has scoring system.17 A significant number of the development of new treatment strategies been correlated to an accurate diagnosis or patients with a morphologic classification of in MDS, the response to chemotherapy may prognosis of MDS, counting the number of refractory anemia (RA) in the World Health be monitored by flow cytometric scoring, abnormalities observed for each patient Organization (WHO) classification20 were quantitatively evaluating the proportion of provides a means of measuring how far the identified as having aberrancies on the abnormal myeloblasts and determining marrow has evolved from normal, providing maturing myeloid cells or monocytes; the number of abnormalities in the maturing additional prognostic information for that therefore more appropriately classified as myeloid cells and monocytes. New drugs patient. The assumption is that a patient with refractory cytopenias with multilineage such as lenalidomide, bevacizumab, drugs multiple phenotypic abnormalities, reflecting dysplasia (RCMD). This suggests that flow interfering with signal transduction path- more extensive loss of gene product cytometric analysis may be more sensitive to ways, e.g. farnesyl transferase inhibitors, regulation, has progressed further than a dysplastic features on the myeloid cells or demethylating agents such as 5-azacitidine patient with fewer abnormalities. One monocytes as compared to morphology. A and decitabine for treatment of low and scoring system was devised based on significant correlation was observed between intermediate-1 risk MDS require advanced experience of comparing the patterns of the flow cytometric score and the WHO flow cytometric methods to identify patients antigen expression for MDS patients to classification. The flow cytometric score was who may benefit from these therapeutic stressed non-neoplastic marrows assessed not related to specific cytogenetic risk groups strategies.13 Recent data has shown that flow early post stem cell transplant (SCT) or for but was related to the overall IPSS and to the cytometry scores decreased during treatment patients with previously treated Hodgkin WHO classification-based prognostic scoring with erythropoietin and antithymocyte lymphoma, aplastic anemia or bone system (WPSS).21 The flow cytometric score globulin.22,23 marrows following chemotherapy for non- correlated with transfusion dependency and hematologic diseases.12 The flow score disease progression to RAEB-1 within 18 Future Endeavors generated was inversely correlated to months. The expression of lymphoid antigens In order for flow cytometric data to be absolute neutrophil count, and was directly on the myeloblasts was also related to routinely used in the management of MDS related to the International Prognostic transfusion dependency. patients, consensus must be obtained for

3 counting myeloblasts using standard 07. Maynadie M, Picard F, Husson B, et al. 17. van de Loosdrecht AA, Westers TM, antibody panels and protocols that also Immunophenotypic clustering of myelo- Westra AH, Drager AM, van der Velden VH, extend to the enumeration of abnormal dysplastic syndromes. Blood. 2002;100(7): Ossenkoppele GJ. Identification of distinct blasts. It will be necessary to define 2349–2356. prognostic subgroups in low and reproducible criteria to discriminate normal 08. Ogata K, Kishikawa Y, Satoh C, Tamura H, intermediate-1 risk myelodysplastic syn- dromes by flow cytometry. Blood. 2007; from abnormal myeloblasts to aid in Dan K, Hayashi A. Diagnostic application 111(3):1067–77. diagnosis of early stage MDS. The of flow cytometric characteristics of CD34+ cells in low-grade myelodysplastic syndromes. assessment of antigen expression on 18. Matarraz S, Lopez A, Barrena S, et al. The Blood. 2006;108(3):1037–1044. immunophenotype of different immature, maturing myeloid cells must also be myeloid and B-cell lineage-committed CD34(+) standardized defining what constitutes an 09. Ogata K, Nakamura K, Yokose N, et al. Clinical significance of phenotypic features of hematopoietic cells allows discrimination abnormal feature. Therefore, large clinical blasts in patients with myelodysplastic syn- between normal/reactive and myelodysplastic studies must be completed to better define drome. Blood. 2002;100(12):3887–3896. syndrome precursors. Leukemia. Mar 13 2008 weighting factors that can be used for each (advance online publication). 10. Stachurski D, Smith BR, Pozdnyakova O, abnormality that can be used to generate a et al. Flow cytometric analysis of 19. Greenberg P, Cox C, LeBeau MM, et al. flow score that is easy to obtain, is highly myelomonocytic cells by a pattern International scoring system for evaluating reproducible, consistent from laboratory to recognition approach is sensitive and prognosis in myelodysplastic syndromes. laboratory and is useful in both diagnosis specific in diagnosing myelodysplastic Blood. 1997;89(6):2079–2088. and prognosis of MDS patients. syndrome and related marrow diseases: 20. Bennett JM. World Health Organization Emphasis on a global evaluation and classification of the acute leukemias and recognition of diagnostic pitfalls. Leuk Res. References myelodysplastic syndrome. Int J Hematol. 2007;32(2):215–224. 2000;72(2):131–133. 01. Terstappen LW, Loken MR. Five-dimensional 11. Stetler-Stevenson M, Arthur DC, Jabbour N, flow cytometry as a new approach for blood 21. Malcovati L, Germing U, Kuendgen A, et al. et al. Diagnostic utility of flow cytometric Time-dependent prognostic scoring system and bone marrow differentials. Cytometry. immunophenotyping in myelodysplastic 1988;9(6):548–556. for predicting survival and leukemic evolution syndrome. Blood. 2001;98(4):979–987. in myelodysplastic syndromes. J Clin Oncol. 02. Loken MR, Wells, DA. Normal antigen 12. Wells DA, Benesch M, Loken MR, et al. 2007;25(23):3503–3510. expression in hematopoiesis: Basis for Myeloid and monocytic dyspoiesis as interpreting leukemia phenotypes. In: J SCaN, 22. Deeg HJ, Jiang PY, Holmberg LA, Scott B, determined by flow cytometric scoring in Petersdorf EW, Appelbaum FR. Hematologic ed. Clinical Flow Cytometry: Wiley-Liss, Inc. myelodysplastic syndrome correlates with 2000:133–160. responses of patients with MDS to the IPSS and with outcome after antithymocyte globulin plus etanercept 03. Bowen KL, Davis, BH Abnormal patterns of hematopoietic stem cell transplantation. correlate with improved flow scores of expression of CD16 (FcR-III) and CD11b Blood. 2003;102(1):394–403. marrow cells. Leuk Res. 2004;28(11): (CRIII) in the bone marrow of patients 13. van de Loosdrecht AA, Westers TM, 1177–1180. with myelodysplastic syndrome. Laboratory Ossenkoppele GJ. Flowcytometry in myelo- 23. Westers T, Chamuleau MED, Westra AH. Hematology. 1997;3:292–298. dysplastic syndromes: Towards a new Changes in flow cytometric dysplasia score 04. Kussick SJ, Fromm JR, Rossini A, et al. paradigm in diagnosis and prognostication? during treatment with erythropoietin/G-CSF Four-color flow cytometry shows strong Leuk Res. 2007;32(2):205–207. reflects responses in low/int-I myelo- concordance with bone marrow morphology 14. Wells DA, Ogata K. On flow cytometry in dysplastic syndromes. Leuk Res. 2007; and cytogenetics in the evaluation for myelodysplastic syndromes, with caveats. 31(suppl 1):S90. myelodysplasia. Am J Clin Pathol. 2005; Leuk Res. 2007;32(2):209–210. 124(2):170–181. 15. Terstappen LWMM, Shah VO, Civin CI, 05. Loken MR, van de Loosdrecht A, Ogata K, Hurwitz CA, Loken MR. Multidimensional Orfao A, Wells DA. Flow cytometry in flow cytometry as a new approach for myelodysplastic syndromes: Report from discrimination between normal and leukemic a working conference. Leuk Res. 2008; cells in peripheral blood and bone marrow. 32(1):5–17. In: ed AJ, ed. Progress in Cytometry II Flow 06. Malcovati L, Della Porta MG, Lunghi M, et al. and Image. Erembodegem, Belgium: Becton Flow cytometry evaluation of erythroid Dickinson; 1989:4–29. and myeloid dysplasia in patients with 16. Terstappen LW, Safford M, Konemann S, et al. Celgene has provided the myelodysplastic syndrome. Leukemia. 2005; Flow cytometric characterization of acute mye- MDS Foundation with an educational grant 19(5):776–783. loid leukemia. Part II. Phenotypic heterogeneity to support the Foundation’s work. at diagnosis. Leukemia. 1992;6(1):70–80.

4 From the Operating Director’s Desk

Kathy Heptinstall educate physicians regarding MDS and the Operating Director emerging treatment options in MDS. We The MDS Foundation would like to thank the organizers including Professor Valeriy Savchenko and Assistant There has been an emergence of new Professor Elena Parovichnikova for the and expanding groups working in MDS and opportunity to connect with these physicians meetings have been held or are scheduled and provide information to both the in many of the nations outside Asia and physician attendees and their patients. Western Europe. This is a welcome addition In 2008 the Foundation will also to the landscape of MDS knowledge participate in the meeting of the Czech and and research. Slovak Hematology in Spindleruv Mlyn on During 2007 the initial Latin American September 5–9, 2008. There will be Symposium on Myelodysplastic Syndromes concurrent sessions for physicians, nurses, was held in Fortaleza, northeastern Brazil and pharmacists. The anticipated attendance from September 28th–29th. This meeting is more than 2,000. We look forward to the was chaired by Silvia M. M. Magalhães, opportunity to reach this important group MD and Fernando Barroso Duarte, MD of and the patients that they serve. the Federal University of Ceará–Brazil. Many of the physicians who worked to Approximately 240 participants attended develop these meetings are participants with this long anticipated program. The 2nd the Foundation as both members of the Symposium on Myelodysplastic Syndromes Foundation and as part of our Centers of will be held in Buenos Aires on November Excellence in MDS from their respective 20–21, 2008. The MDS Foundation is very countries. Many of them have worked with pleased to support the work of this important the Foundation since our inception in 1994 group and looks forward to participating in or before the formalization of the Foundation this meeting. (as is the case with our Brazilian physician In October 2007, the Foundation friends) and we value their participation and participated in the 1st Symposium on MDS support of our work. Romania. The symposium was held by the The Foundation looks forward to Association of MDS Physicians in Romania continuing our collaboration with these and was co-Chaired by Radu Gologan, MD groups and partnering with and supporting of the Fundeni Clinical Institute of Bucharest. other emerging MDS organizations in order The meeting was extremely well attended by to expand the reach of the Foundation to all many Romanian physicians and nurses. The corners of the world. need for information about MDS and for patient support materials was evident in the activity at the MDS booth. In conjunction with this meeting an MDS Patient Forum Practice and was held and more than 30 patients and caregivers attended. The Commission of Treatment Survey Oncology Patients in Romania assisted the The Myelodysplastic Syndromes Foundation in recruiting patients to attend Foundation would like to know more this meeting. The issues that MDS patients about your approach to the diagnosis in Romania face are very much the same as and treatment of patients with MDS. those that patients living with MDS Please assist us by completing a brief worldwide face. online survey. The Foundation was privileged to Go to www.mds-foundation.org and participate in a meeting of Russian click on Practice & Treatment Survey. physicians that was held in Moscow in May 2007. This important meeting was held to

5 MDS Young Investigator Grants Program

MDS Young Investigator Grants Award Reception MDS Foundation-

In December 2005 the Myelodysplastic The Foundation is dedicated to furthering Moffitt Cancer Center Syndromes Foundation, Inc. initiated a series the research into MDS and invites young Celebrity Gala Party of grants for The Young Investigator’s Grant investigators (under 40 years of age) from Fund for Fellows in Hematology from institutions that form our MDS Centers of and Pro-Am for MDS institutions that form the Myelodysplastic Excellence to submit their proposals for either Syndromes (MDS) Centers of Excellence. basic research or clinical management into Two awards will be granted annually. the causation, epidemiology, molecular biology, This year’s recipients were honored at a cytogenetics, morphology, prognosis and reception on December 7th in conjunction management of the Myelodysplastic Syndromes. with the American Society of Hematology’s All MDS Centers of Excellence are invited annual meeting.The Grant Review Committee to nominate one candidate from their insti- selected Klas Raaschou-Jensen of Copen- tution. A mandatory brief letter of intent (LOI) hagen University Hospital in Denmark for his is to be submitted no later than June 16, 2008. grant submission entitled “Identification and The LOI should contain a brief paragraph Characterization of the Genetic Background in describing the background of the candidate a Unique Danish Family with Several Cases and 1–2 paragraphs describing the of Hypoplastic Myelodysplastic Syndrome” proposed project and the name of the mentor. February 17–18, 2008 and Azim Mohamedali of Kings College A formal application will be sent to you shortly Innisbrook Resort & Golf Club London in the United Kingdom for his after receipt of the LOI and will be due no Copperhead Course submission entitled “Prevalence and Patho- later than August 15, 2008. Notification of Tampa Bay, Florida genetic Significance of Uniparental Disomy the awards will occur by October 1, 2008 with on Chromosome 4q in RARS.” As this year’s activation on January 1, 2009. These awards We are grateful to all of our old friends recipients, each was awarded a $40,000 will provide $40,000 over a 24-month period and our new ones who helped make our annual golf tournament partnership with grant for continued research. from January 1, 2009 to December 31, 2010. H. Lee Moffitt Cancer Center such a huge success. We would also like to thank our co-hosts, PGA Champions Tour Professional Bruce Fleisher and NFL Hall of Fame Quarterback Bob Griese who were joined by PGA/LPGA Tour Professionals and many other pro and celebrity guests. We sincerely appreciate the donation of their time and knowledge by our celebrity guests. On Sunday night, guests attended the VIP Gala where they got to swing into action for MDS by dancing to the sounds of the legendary Hall of Fame Vocal Group, The Memories as well as bid on spectacular auction items including golf packages, and rare autographed memorabilia. The $10,000 putting contest was a hit with the golf (Pictured L to R) Robert J. Weinberg; Stephen Nimer; Eva Hellström-Lindberg; Klas Raaschou-Jensen; enthusiasts and the food was scrumptious. Azim Mohamedali; John Bennett; Ghulam Mufti; Kathy Heptinstall On Monday participants enjoyed the golf clinic, and rounds of golf where they got a THIS YEAR’S TIMELINE chance to play along with professional athletes such as Fred “Crime Dog” McGriff, Letters of Intent Due: June 16, 2008 Proposals Due: August 15, 2008 Mitch Adcock, Dale Eggeling, and P.T. Willis, Notification of Awards: October 1, 2008 to just name a few. This was followed by the awards luncheon where guests were

6 treated to a video montage highlighting the Foundation Initiatives for 2008 and Beyond… plays of the day. Participation in this worthwhile event The MDS Foundation is committed to – The International Working Group on helps fund the Foundation’s Young making a significant contribution to the MDS Cytogenetics Investigator Grants program. Moffitt Cancer advancement in understanding and of – The International Working Group on Center serves one of the nation’s largest accurately diagnosing the myelodysplastic Quality of Life in MDS state populations of patients with MDS. Our syndromes. We will be focusing our efforts in partnership with H. Lee Moffitt Cancer the following initiatives: CME PROGRAMS Center will not only foster regional Understanding MDS – ■ awareness and understanding of MDS but ADOPT REGISTRY A Primer for Practicing Clinicians: also raise funds for basic research that will An 8-Part Series fuel new therapeutic developments. These Visit www.mds-foundation.org and click on REGISTRY grants are awarded on an international level The MDS Foundation Resource Center to to encourage young hematologists to ■ PATIENT QUALITY-OF-LIFE FORUMS take advantage of this comprehensive specialize in MDS. After four years, the ■ program, and other informative programs proceeds from this tournament have funded WORLDWIDE PATIENT SUPPORT GROUPS coming soon, designed to provide you with 6 two-year Young Investigator Grants tools and information that will assist you in ■ 10TH INTERNATIONAL MDS totaling $240,000. administering the best care to your patients. SYMPOSIUM, PATRAS, GREECE: We thank all the participants who May 6–10, 2009 The first four segments of this eight segment joined “The Journey to Hope” for MDS series are currently available: patients around the world and we look forward to seeing you next year! Segment 1: The Past & Present in MDS Segment 2: Clinical Presentation, Diagnosis & Pathology MDS Essentials Segment 3: Ineffective Hematopoiesis: E-Newsletter Considerations in Diagnosis and Treatment The Foundation has created a Segment 4: Anemia in MDS: Survival, new electronic E-Newsletter to BECOME A QoL, and Treatment Options provide healthcare professionals CENTER OF and patients from around the EXCELLENCE Written programs are available in English, world with timely information, in IN MDS Spanish, French, Italian, German, Japanese. a cost-effective manner. The MDS MORPHOLOGY ■ CE Awareness Program for Nurses Essentials E-Newsletter is the VIRTUAL electronic version of our quarterly MICROSCOPY IN ■ CE Awareness Program for Pharmacists newsletter. Receive up-to-date MDS-AML: THE information on clinical trials, KEY TO ENHANCING MDS FOUNDATION SPONSORS CLASSIFICATION research and news by simply The MDS Foundation acknowledges subscribing online at: A CME Series support from: www.mds-foundation.org. http://www.mds-foundation.org/ virtualmicroscopy/home.html

■ ADDITIONAL PROGRAMS – Keys to Identifying Patients at High Risk for Bone Marrow Failure Syndromes: Is it MDS? – MDS Practice and Treatment Survey – The International Working Group on MDS Morphology

7 Meeting Highlights and Announcements

Changing the and combination therapies, and the PLAN TO ATTEND evaluation of therapeutic interventions based Characterization upon disease stability or progression. More Changing the World of MDS: Diagnosis than 1500 people attended this symposium. of MDS Diagnosis The topics and international faculty for to Therapy this symposium included: and Classification: December 7, 2007 ■ Issues in Prognostic Stratification Challenges in Atlanta, Georgia Ulrich Germing, MD Morphology Heinrich-Heine Universität MDS Satellite Symposium held at Düsseldorf, Germany June 12, 2008 The American Society of Hematology Bella Center 49th Annual Meeting and Exposition ■ What’s Beyond Morphology? Denise Wells, MD Copenhagen, Denmark Hematologics, Inc. Seattle, Washington ■ Issues in Combination Therapies In MDS Allen Yang, MD, PhD University of Southern California Los Angeles, California ■ Immunologic Abnormalities in MDS Jaroslaw Maciejewski, MD Cleveland Clinic Foundation Georgia World Congress Center Cleveland, Ohio The MDS Foundation held its 10th ■ MDS Molecular and consecutive satellite symposium on Friday Cytogenetic Characterization preceding the American Society of Stephen D. Nimer, MD Hematology’s annual meeting. This Memorial Sloan-Kettering symposium entitled “Changing the New York, New York Characterization of MDS: Diagnosis to ■ Highlighting the Newest Trends Therapy,” was chaired by Dr. Stephen D. in MDS Research Nimer of Memorial Sloan-Kettering Cancer John M. Bennett, MD MDS Satellite Symposium to be held Center in New York and a member of the University of Rochester at the 13th Congress of the European Foundation’s Board of Directors. The Rochester, New York Hematology Association (EHA) accurate categorization of MDS patients and Topics for the symposium and faculty speakers the predictive course of their disease as well will include: as the appropriate selection of their individual therapy rely on the treating ■ MDS Morphology: physician’s knowledge of the pathogenesis An Evolution in Criteria of MDS, as characterized by clinical Ghulam J. Mufti, MD parameters, laboratory studies, bone marrow ■ New Morphologic Definitions in morphology, and chromosomal status. This MDS and Virtual Microscopy symposium focused on the ever unfolding John M. Bennett, MD morphologic and response assessment Jean E. Goasguen, MD criteria, the impact of karyotypic abnor- ■ Interactive Participation in malities and acquisition of new abnormal If you would like a copy of the CD-ROM containing the video and slide presentations Morphologic Diagnosis karyotypes as they relate to disease from this symposium you can contact The MDS Faculty/Participants progression, current molecular genetic Foundation, 36 Front Street, P.O. Box 353, research on therapeutic targeting of the Crosswicks, NJ 08515, Tel. 800-MDS-0839 or PLEASE MAKE SURE TO VISIT THE epigenome, the need for targeted therapies visit our website www.mds-foundation.org. MDS FOUNDATION BOOTH #2.013

8 Evolving Diagnostic ■ Improving the Classification DINNER SYMPOSIUM and Prognostic Stratification Tools and Treatments EVOLVING of MDS Patients in MDS DIAGNOSTIC John M. Bennett, MD TOOLS AND ■ Evolution in MDS Research May 16, 2008 TREATMENTS and Treatment Philadelphia Marriott Downtown IN MDS Lewis Silverman, MD Philadelphia, Pennsylvania Myelodysplastic Disease Center and MDS Satellite Symposium held at the International Myeloproliferative the 33rd Annual Congress of the Disease Clinical Consortium Oncology Nursing Society (ONS) Mount Sinai Medical Center New York, NY The MDS Foundation recently presented ■ Expanding Your Impact on Patient an adjunct symposium held in conjunction MAY 16, 2008 6:30–8:30 pm Outcomes: Tracking Treatment with the 33rd Annual Congress of the Philadelphia Erin Demakos, RN, CCRC Oncology Nursing Society (ONS) in Marriott Downtown Philadelphia, Pennsylvania. PHILADELPHIA, PA Mount Sinai Medical Center New York, NY Topics for the symposium and faculty speakers included: ■ The MDS Foundation If you would like a copy of the CD-ROM ■ Welcome and Introduction and Quality of Life containing the video and slide presentations from this symposium you can contact The MDS John M. Bennett, MD Kathy Heptinstall, BSN, RN Foundation, 36 Front Street, P.O. Box 353, University of Rochester The MDS Foundation, Inc. Crosswicks, NJ 08515, Tel. 800-MDS-0839 or Rochester, New York Crosswicks, New Jersey visit our website www.mds-foundation.org.

International and Country Congresses and Emerging MDS Societies International Congresses ■ American Society of ■ German Society for Hematology In order to promote awareness and Clinical Pathology ■ Slovenian Hematology Congress education for patients and healthcare ■ American Society of Hematology ■ Nordic Society of Hematology professionals, the MDS Foundation booth ■ European Oncology Nursing Society will be at the following country society ■ Baltic Congress on Hematology ■ European Group for Blood and Marrow and international meetings to distribute ■ Groupe Français Transplantation information: des Myélodysplasies ■ British Society for Hematology ■ American Psychosocial ■ Czech & Slovak Congress Oncology Society ■ European Hematology Association in Hematology ■ Oncology Nursing Society ■ International Society of Hematology ■ Romanian Society of Hematology ■ American Society of Clinical Oncology European MDS Societies ■ Society of Portuguese Hematology ■ BIO International Convention ■ ■ Belgian Hematology Society Turkish Society of Hematology ■ International Society of ■ ■ LOSEV – Ankara Türkiye Losemili Experimental Hematology Budapest MDS Group Cocuklar Vakfi ■ Dutch Haemato-Oncology Association

9 Foundation Plans International Symposia Through 2013 The MDS Foundation has approved applications for the next three International Symposia. These symposia are scheduled for 2009 in Patras, Greece; 2011 in Edinburgh, Scotland, and 2013 in Berlin, Germany.

Tenth International Symposium: Spring 2009 Patras, Greece Sponsor: Nicholas C. Zoumbos, MD

Eleventh International Symposium: Spring 2011 Edinburgh, Scotland Sponsor: David T. Bowen, MD

Twelfth International Symposium: Spring 2013 Berlin, Germany Sponsor: Wolf-Karsten Hofmann, MD, PhD

10 Patient Services

Angel Flight Contact Angel Flight Funding Source: Mailing Address: Angel Flight is a national non-profit 501(c)(3), For nearly 25 years, Angel Flight has charitable organization funded entirely by Angel Flight helped people overcome the obstacle of tax-deductible donations from individuals, 3161 Donald Douglas Loop South distance and access to healthcare. Through foundations and corporations and the a nationwide network of 1,500 volunteer Santa Monica, CA 90405 generosity of our volunteer pilots who donate pilots, Angel Flight coordinates free air E-mail: [email protected] the direct costs of every flight. Over 94% of transportation for people in need. Angel all support and contributions donated to Angel Phone: Flight’s generous and compassionate Flight goes directly to program services. volunteer pilots —men and women from all Main: 310-390-2958 Volunteer Opportunities: 50 states with a wide variety of backgrounds Toll-Free: 888-4-AN-ANGEL Angel Flight is currently seeking volunteer — donate flights in their personal general Automated Voice Mail: pilots in many areas of the country. For more aviation aircraft. Passengers fly totally free, 310-398-6123 information, visit www.angelflight.org or call as often as necessary and for as long as 24-Hour Emergency Response: 888-4-AN-ANGEL. needed, to reach medical care or for 310-317-1000 numerous other humanitarian needs. Since Fax: 310-397-9636 Passenger Eligibility: 1978, Angel Flight volunteer pilots have Our volunteer pilots fly passengers free Information: flown over 30,000 missions. In 2002, of charge and as often as necessary for Angel Flight volunteer pilots provided free General Information: diagnosis, treatment, and follow-up care, air transportation for nearly 9,500 [email protected] and for other humanitarian reasons. passengers (men, women, and children), Prospective pilot information: 1. Angel Flight passengers must be saving them over $4 million in commercial [email protected] travel expenses, helping them reach ambulatory or need little or no assistance Social worker information: medical treatment that would otherwise to board and exit the aircraft. [email protected] be inaccessible. 2. Passengers must be medically stable and Although the vast majority of its Member information: able to fly in an unpressurized aircraft. passengers fly for medical reasons, Angel [email protected] 3. Passengers must demonstrate financial need. Flight pilots also offer free flights for other Program Description Application Method: humanitarian reasons. Each summer, Angel Since 1978, Angel Flight has helped to Flight’s volunteer pilots distribute the To request a free flight, just call toll-free ensure equal access to healthcare and children from Chernobyl to host homes 888-4-AN-ANGEL. In urgent situations, a improve the quality of life for thousands of across the U.S. for a two-month summer coordinator can be paged after normal respite. They also transport hundreds of people throughout the United States by business hours. Just call 888-4-AN-ANGEL children to health-related summer camps coordinating free air transportation for those and follow the paging instructions on the each year. And, within 48 hours of the in need. voice mail message. terrorist attacks on 9/11/01 and while most Services Provided: You may also request a flight by visiting aircraft were still grounded, Angel Flight Angel Flight coordinates the following www.angelflight.org. volunteer pilots were in the air transporting services: Additional Information: emergency service personnel, disaster 1. Transporting people with medical and victims, blood and medical supplies in Service Area: All U.S. states, parts of financial need to reach medical care far Canada and Mexico support of disaster relief efforts in New York from home. City and Washington, DC. Cost/Fees: None, but donations accepted. 2. Transporting people with time-critical Angel Flight is a non-profit 501 (c) (3) Waiting List: None, but 1–2 weeks needs associated with a transplant organization that relies 100% on the advance notice is preferred. procedure. generosity of volunteer pilots, as well as 3. Transporting precious cargo such as Target Group: Anyone with financial need individual, corporate, and foundation who needs air transportation contributions. Angel Flight is the oldest and organs, blood, tissue and medical supplies. Age Range: All largest national volunteer pilot organization 4. Providing free air support for disaster in the United States. For more information relief efforts in times of crisis. Handicap Access: Somewhat, depending about Angel Flight, visit www.angelflight.org 5. Providing flights for numerous other on type and size of aircraft or call toll-free 888-4-AN-ANGEL. humanitarian needs. Languages: English and Spanish

11 Patient Forums and Support Groups

Spreading the Word Worldwide – GIVE A GIFT OF HOPE... Patient Quality-of-Life Forums Journey to Hope Patient forums have been held to date in: On October 26th, 2004 we held our first Bracelet MDS Patient Forum in New York City. Since Lovin’ Kisses Beading UNITED STATES then we have held 34 worldwide. Patients Promoting MDS Awareness ■ New York City, New York participate in a study group and share their ■ Tampa, Florida experiences living with MDS and the quality- Sandy Madrigal, Designer/Creator P.O. Box 2541 ■ Palo Alto, California of-life issues that they face. They are also given the opportunity to participate in a Davenport, Iowa 52809-2541 ■ Scottsdale, Arizona question and answer session with an MDS Visit www.lovinkissesbeading.com. ■ Chicago, Illinois specialist. The information we develop is ■ Philadelphia, Pennsylvania used to educate healthcare professionals This handcrafted bracelet was created to draw attention to Myelodysplastic Syn- ■ Pittsburgh, Pennsylvania about MDS from the patient’s perspective. dromes. My design is dedicated to the loving ■ Oak Brook, Illinois memories of my mother, Betty and my sister, ■ Dallas, Texas Established MDS Linda. They were diagnosed with MDS, just ■ Seattle, Washington Patient Support Groups eight weeks apart. Both fought the disease ■ Covina, California bravely and with great dignity. UNITED STATES Now, I’m doing what I can to continue ■ Rochester, Minnesota ■ Chicago Illinois Support Group meets on their fight. Each bracelet is only $20.00 ■ Baltimore, Maryland the fourth Tuesday of the month from (plus S&H). Visit my website for details. A ■ Rochester, New York 1:30–3:00 pm at Northwest Community portion of the proceeds from the sale of my ■ Los Angeles, California Hospital’s Cancer Service department (lower bracelets will be donated to The MDS level), 800 W. Central Road, Arlington Foundation, to help further their research EUROPE Heights, Illinois. Contact Kim Jensen at and create awareness. ■ Edinburgh, Scotland UK [email protected] or call 847-618-6914. ■ Paris, France ■ Puget Sound, Washington Support ■ Bournemouth, England UK Group meets on the third Tuesday of ■ London, England UK the month at 6:30 pm at the Puget Sound Blood Center, 921 Terry Avenue, ■ Leeds, England UK Seattle, Washington. Contact Steve ■ Marseille, France Kessler at steve@ Qamonline.com or call ■ Vienna, Austria 800-877-0168. ■ Prague, Czech Republic ■ San Francisco Bay Area Support Group ■ Stockholm, Sweden meets on the second Sunday of the month Women’s Journey to Hope Bracelet ■ Freiburg, Germany at 2 pm at the Park Blvd. Presbyterian Church, 4101 Park Blvd., Oakland, ■ London, United Kingdom California. Contact 800-MDS-0839 for ■ Florence, Italy more information. ■ Dubrovnik, Croatia EUROPE (Countryside Groups) ■ Sinaia, Romania ■ France: Association Connaître et ■ Toulouse, France Combattre les Myélodysplasies Future forums are scheduled in: ■ United Kingdom: UK MDS Patient Forum ■ Lund, Sweden – June 9, 2008 ■ Croatia: Croatian Association of ■ Copenhagen, Denmark – June 10, 2008 Leukemia and Lymphoma Patients ■ Boston, Massachusetts (TBD) ■ European Cancer Patient Coalition (ECPC) Men’s Journey to Hope Bracelet

12 Living with MDS...

The Foundation would like to invite MDS Fundraiser patients and their families to share their I wish to thank the Foundation stories with others in the MDS community. for allowing me to express my Original One-Act Living with MDS poses challenges and gratitude. I also wish to Musical a Success many of you have stories that provide hope to others. continue to offer possible Canton, Michigan Please contact the Foundation, if you comfort to any new patients On January 12th and 13th, an original would like us to publish your story!!! (with expectations of improving one-act musical, Behind the Curtain, My Story... their present condition) by opened to a full house in the Biltmore Studio sharing my personal experience. at The Village Theater at Cherry Hill in Canton, Michigan. The show, a lighthearted Eugene “Gene” Temple musical about two people that meet working My name is Eugene Temple and I am props at a community theater show an eighty year old retiree, formally engaged rehearsal, was written by Linda Pohl with in a pest control business for thirty-five Tim Chanko as the composer of the music years. Unfortunately, years ago, safety and lyrics. The actors in the play were Tim standards were not practiced as much as Chanko, Stefanie Mallasch, Christopher they are today. I handled benzene petroleum Tremblay and Joe Cone. The crew consisted products on a daily basis. I was diagnosed of Linda Pohl, director, Betty Berryman, with MDS approximately three or four assistant director, Kelvin Elvidge handled the years ago. lighting and Janet Carson was the pianist. I have been treated with Procrit, The show was free to attend, although Aranesp, Leukine, and Neupogen admini- donations were accepted. The money stered to me in the early MDS stages. I collected, over $600, was then divided have had eight blood transfusions over a between the American Cancer Society and period of several months, each of two units the MDS Foundation. at approximately three week intervals. Linda and Tim wrote the show over a MDS patient Gene Temple shares his story Unfortunately, these transfusions brought period of two years. It took almost another on side effects of iron overload. A chelate I wish to thank the Foundation for year to find a place to perform. They wanted drug called Exjade was prescribed and allowing me to express my gratitude. I also to do the show as a fundraiser and picked took approximately four months to expel the wish to continue to offer possible comfort to the two organizations because Linda’s son, iron overload in my system. any new patients (with expectations of Mike Nelley, is afflicted with both conditions. During this difficult time, I kept in touch improving their present condition) by sharing They also received informational brochures with Audrey at the MDS Foundation and my personal experience. to display at the table that held the donation jar to help raise awareness of MDS. found her most helpful and reassuring. I While understanding MDS is at present a later offered to discuss my treatment disease with no quick cure in sight, Vidaza (going on seventeen months now) with any has improved the quality of my life by new patients about to start treatment with tenfold. Vidaza has been my salvation! Vidaza — considering it was a relatively Kudos to all the researchers that put the new chemo drug. quality of life first and foremost, and to the I have since taking Vidaza received MDS Foundation for giving out the latest several phone calls from people living in updated treatment information available to Florida, to as far away as Anchorage, Alaska. the public. I answered their questions to the best of my In closing, I wish to announce that my ability, hoping to relieve any feelings of blood counts are presently up and life is anxiety they may have, as I had experienced sweet. I am eternally grateful to my Heavenly in the beginning of my treatment. I wish Father for giving me “one day at a time”. them all the best! Just to stand in the shower for five minutes without fear of Respectfully, collapsing, how great is that!!! Eugene “Gene” Temple Mike Nelley, Linda’s 21-year old son, has MDS

13 Miracle Workers realities. And yet, when all was said and their patients want to be treated until doing done, I think that my mother’s relationship so can be called with assurance (rather than David Rieff with her principal doctors can only be fully in terms of probability alone) medically futile. understood—and was only fully effective— Obviously, there is a cost to this. In opting for Even today, in our high-tech, accountability- because it was in some ways as shamanistic obsessed and, supposedly at least, patient- treatment—in her case, a bone-marrow as the relations our ancestors knew before transplant—my mother suffered far more empowered times, the oldest of all relations the advent of modern scientific medicine. between patient and physician—that of physically than she would have had she opted supplicant to shaman— continues to exert Of course, she wanted the science as well for palliative care alone. But in honoring her its authority. This may not seem sensible if as the magic. But the fact that someone so wishes, without for a moment understating the only valid criterion for judging the doctor- untempted by mystical inclinations could in the risks, her doctors opted for treating her in patient relationship is the use that is made an important sense be sustained by what the full, human sense of the word. of scientific data and clinical findings. But was in part a mystical relationship is Doctors abandon such commitments at their good doctors want to treat their patients, emblematic of the extraordinary demands peril. To generalize, after all, is to deny the not just their patients’ diseases, and that, in extremis, patients cannot help complexity of each human being. To be certainly most patients want to be treated as making—demands that are as impossible sure, these are complicated questions — human beings, not cases. Viewed from that for doctors to fulfill as they are impossible complicated still further by the democrat- perspective, the elevated expectations for patients to forgo. ization of medical information that the Internet patients bring to the consulting room may be Ultimately, it is no doubt simply irrational to has brought us and by the less hierarchical for the best. expect physicians to simultaneously be great and priestly approach to patients on the part When my mother found out she had clinicians, great scientists and great of doctors. Forty years ago, for example, myelodysplastic syndrome, the terrible blood psychologists and humanists (as well as doctors did not typically advise their patients cancer that eventually took her life, she great accountants). Some are; but a medical to seek second opinions; today, most good oscillated between numb despair and acute system built on the assumption that such physicians actively encourage it. panic. When she was panicked, nothing those mastery can be normative would be an But information is not knowledge, and there is who loved her did or said could calm her exercise in folly. Perhaps this is why in a real question as to whether a person without down, let alone console her.And yet we soon recent years, the doctrine of “evidence- medical training can navigate the thickets of learned that if we could reach Stephen Nimer, based medicine” has become so influential information on the Web and distinguish good her principal physician at the Memorial Sloan- in American medicine. information from bad. This is not to say that Kettering Cancer Center, by telephone, or if, By pushing medical providers to make their this democratization is a bad thing; only that better still, Dr. Nimer could make time to see decisions almost exclusively on the basis of it poses problems and that, in any case, my mother, however briefly, her awful statistics, this doctrine implies that what is there are limits to what it can offer us. distress would abate —at least for a while. good for a group can be assumed to be good In the end, whether or not we welcome the Observing my mother’s exchanges with Dr. for every individual despite the fact that this continuation of the old shamanistic relation Nimer, I could not help wondering why what is often not the case. Evidence-based between the gravely ill and their doctors, it is he said consoled her. For he never played medicine may help the physician avoid the probably humanly inevitable. Without it, down the lethality of her disease, nor did he subjective and take a harder line on what is everyone becomes their own physician, and, hold out false hope. Doubtless, Dr. Nimer’s medically useful and what is medically futile, attractive as that fantasy may be, it is still a long experience with gravely ill people, the but what Dr. Jerome Groopman has called fantasy. Of course, this should not be allowed hard-won human skills he acquired over its “strict binary framework” is hardly likely to occlude the fundamental truth that the decades of practice, played a central role. to help a doctor treat a person, as opposed physician-patient relationship has become But it was my sense at the time, and it is my to that person’s disease. murky and even contradictory. What, if sense now, more than three years after my What my mother wanted—which was to anything, we can do about this is another mother’s death, that the comfort my mother undergo any treatment, no matter how question. In all likelihood, we will all have to derived from speaking with him was also terrible, that promised a cure for her live with it and, of course, die with it as well. due to her own conception—her very disease—would probably have been David Rieff, a contributing writer, is the traditional conception— of their relationship. viewed skeptically by a physician schooled author most recently of “Swimming in a Sea She was a person who had no time for so- in what Groopman calls the “bean counting” of Death: A Son’s Memoir.” called alternative medicine, nor did she of evidence-based medicine. But doctors First published in The New York Times Magazine, believe that her will would somehow be like Nimer and Groopman hold that their February 17, 2008. ©2008 by David Rieff, reprinted strong enough to counter the scientific mission is to try to treat their patients as with the permission of The Wylie Agency.

14 Drug News

Once-Daily Exjade ® undiagnosed or untreated, excess iron in evaluating cardiac, hepatic and endocrine the body can become toxic. The body has function, will determine the impact of iron Shown to Remove no inherent mechanism to remove excess reduction with Exjade on morbidity and Iron From the Heart, iron, so iron chelation is used as an mortality in MDS. effective treatment for transfusion-related These data provide further context to a According to Data iron overload. separate study presented at this year’s Presented at ASH Prior to Exjade, patients in the United meeting, which demonstrates that chelation States relied on chelation therapy that had to therapy provides a significant survival ■ Approximately 78% of beta- be administered by continuous infusion. benefit for heavily-transfused patients with thalassemia patients had Once-daily Exjade oral monotherapy offers low and intermediate MDS. A prospective decreases in cardiac iron and 90% patients effective iron reduction without the study of MDS patients found that the had decreases in liver iron after need for any infused chelation therapy. median overall survival from diagnosis six months, interim data show was 115 months in chelated patients ■ Study in sickle cell disease (SCD) Long-Term Efficacy and Safety versus 51 months in non-chelated patients patients with iron overload Demonstrated in SCD Patients (P<0.0001). showed continued safety and A separate four-year extension study efficacy over two years demonstrates the long-term, dose-dependent Study Details efficacy and safety of treatment with Exjade ■ Safety and efficacy demonstrated [Abstract #2781] in lower-risk myelodysplastic for chronically transfused patients with SCD. The first study is a prospective, single- syndromes (MDS) patients Patients treated in the core study with doses arm, phase II trial of 18 chronically of 20 and 30 mg/kg/day showed continued transfused beta-thalassemia patients. On December 10, 2007, Novartis decline in serum ferritin (SF), an indication of During this trial, SF levels are tested Pharmaceuticals Corporation announced in iron buildup in the body. For patients initially monthly and liver and cardiac iron their press release that new data show treated with 5 and 10 mg/kg/day doses in concentration levels are tested every six once-daily Exjade® (deferasirox) reduces the core study, SF levels gradually declined months. This study will enroll 30 patients iron levels in the heart and liver in beta- following a dose increase to approximately at four U.S. centers, with Exjade administered thalassemia patients. These interim results 20 mg/kg/day. There were no significant at 30–40 mg/kg/day for the next 12 to from an ongoing trial show that at six changes in markers of liver or renal function 18 months. The ongoing assessments will months, approximately 78 percent of and no cases of progressive increases in determine whether Exjade continues to participants had decreases in cardiac iron serum creatinine (SCr). Additionally, no improve cardiac iron burden and maintain or and 90 percent of patients had decreases in new adverse events or safety concerns improve cardiac function in severely iron- hepatic iron. These results were reported at have been reported thus far in the overloaded patients. Data from other larger the 49th Annual Meeting of the American extension study. studies measuring the effects of Exjade on Society of Hematology (ASH) in Atlanta. cardiac iron reduction and cardiac function “These preliminary data are encouraging. Exjade Demonstrates Safety will be available next year. This study will be At a dose of 30 mg/kg, Exjade lowered both and Efficacy in Lower-risk presented in a poster session on Sunday, heart and liver iron levels in most patients,” MDS Patients December 9 from 6:00–8:00 PM. said John C. Wood, MD, PhD, Children’s Additional research demonstrates that Hospital of Los Angeles. “Removal of heart treatment with Exjade decreased mean SF iron is particularly important because iron levels over one year in patients with low- or cardiotoxicity remains the leading cause of intermediate-1 IPSS risk MDS. Additionally, death in thalassemia major patients.” 100 percent of patients experienced a Chronic iron overload is a potentially stabilized labile plasma iron (LPI), the life-threatening condition that results from reactive species of non-transferrin-bound frequent blood transfusions required to iron, over 12 months, indicating 24-hour sustained suppression of toxic iron with treat certain types of chronic blood Eisai has provided the disorders, including sickle cell disease Exjade. Exjade was shown to have a MDS Foundation with an educational grant (SCD), thalassemia, and myelodysplastic manageable safety profile in this population. to support the Foundation’s work. syndromes (MDS) and other anemias. If left Ongoing assessments of this trial,

15 [Abstract # 3395] The SCD study, an extension phase of an ongoing phase II study comparing Exjade with deferoxamine, evaluated the safety and efficacy of Exjade at 20–30 mg/kg/day in 159 patients over a 2.7-year period. Penn Program for Stress Management Patients in the deferoxamine arm of the extension trial were allowed to cross over to Stressed? Want to learn how to manage your symptoms of stress more effectively? Exjade for the extension trial. This study will The Penn Program for Stress Management is a mindfulness-based stress management be presented in a poster session on Monday, program that uses powerful meditation-based techniques as the primary tool for long- December 10 at 5:00 PM. term stress management. Mindfulness is taught as a scientific, systematic approach in which participants learn to rest attention in the moment-to-moment awareness of their [Abstract #1470] experience of physical sensations, thoughts and feelings. Participants of the program The third study, US03, is a phase II, thoroughly explore mindfulness and its uses in reducing the symptoms of stress that open-label, three-year trial in 176 patients are experienced in the body and mind. 7 class locations in the Philadelphia region. with low- or intermediate-1 IPSS risk MDS To learn more about this program go to www.pennhealth.com/stress or contact: and transfusional iron overload (SF 1000 g/L and >20 units red blood cell (RBC) PENN Program for Stress Management transfusions), with SCr within two-fold the 3930 Chestnut Street, 6th floor upper limit of normal (ULN). Initial Exjade Philadelphia, PA 19104 dose was 20 mg/kg/day and could be Phone: 215-615-2774 increased to 40 mg/kg/day based on Fax: 215-615-2729 tolerability and response. SF was monitored E-mail: stress.management@ uphs.upenn.edu monthly and LPI was assessed quarterly. www.pennhealth.com/stress This abstract will be presented during a poster session on Saturday, December 8 at 5:30 PM. Insurance and MDS White Paper [Abstract #249] Drug Reimbursement The MDS survival results are from a Available Through Resource Guide prospective survey of hematological data MDS Foundation in 170 MDS patients from 18 Groupe We have assembled a listing of insurance Francophone des Myelodysplasies Centers This MDS White Paper discusses and drug reimbursement resources for MDS who were referred for blood transfusions comparative data and the potential patients. It is important to know that there is during a one-month period (May 15– clinical benefits of treatments that are support for those who cannot afford June 15, 2005). Survival was analyzed two either approved by the U.S. FDA or medicine or other healthcare costs. We hope years later, at the reference date of May 15, the EMEA or are under consideration this new resource will be beneficial in 2007. This study will be presented on by these bodies. This paper and a helping you with your medical needs. Monday, December 10 at 8:00 AM. subsequent peer-review manuscript This guide to assist- will hopefully assist physicians in ance programs in the matching patients with treatment. United States is available Coupled with the Foundation’s other for download from the endeavors we hope to impact the Foundation’s website or care that is available to patients can be ordered in booklet around the world. To download your form upon request. the myelodysplastic syndromes foundation, inc. free pdf copy, visit our website Schering-Plough has provided www.mds-foundation.org or, if you the MDS Foundation with an educational grant to support the Foundation’s work. prefer, call 800-MDS-0839 to request a hard copy.

16 Patient Registries and Referrals

MDS Patient Registry Slone Patient Registry Patient Referrals The patient registry form has been revised The Slone Epidemiology Center at and a patient authorization form has been Boston University is enrolling patients who Myelodysplastic syndromes can developed to meet HIPAA guidelines. The have recently been diagnosed with be difficult to diagnose and treat. It Patient Registry will help further research into myelodysplastic syndromes in a voluntary is important for both patients and the etiology, diagnosis and treatment of MDS. research project called the Patient their families to know that optimal Currently, the MDS Patient Registry is only Registries at Slone: MDS. The registry treatment is available and that accepting patients through our designated gathers important information about the quality-of-life can be enhanced. Centers of Excellence. A two page data impact of MDS and its treatments on If you would like information sheet will be forwarded to investigators who patients’ physical, emotional, social, and about treatment options, research, or wish to contribute patient’s names to the economic well-being. Participation in the quality-of-life, we would be glad to Registry. The Registry is located at the Registry does not affect the care or help. The Foundation offers a variety of MDS Foundation’s Statistical Center at the treatments that patients receive. patient services, including preferential referrals to the Foundation’s MDS University of Rochester Cancer Center. You are eligible to join if: The Foundation looks forward to Centers of Excellence. We can also building the Patient Registry with our ■ You have been diagnosed with MDS within help identify physicians and centers to Centers of Excellence. the past 3 months support you if you are travelling and need assistance. If you would like to become a Center of ■ You live in the US Excellence, please contact The Foundation at Please contact us at: You do not need to have received any the address below. 1-800-MDS-0839 (phone) medicines or other treatments for your MDS The MDS Foundation, Inc. or 609-298-0590 (fax). to be eligible. 36 Front Street, P.O. Box 353 Outside the US please call: Crosswicks, NJ 08515 For more information or to enroll: 609-298-1035. Phone: 1-800-MDS-0839 within the US Visit http://www.bu.edu/prs/mds, You can visit our website at: Outside the US only: 1-609-298-6746 e-mail [email protected] or http://www.mds-foundation.org. Fax: 1-609-298-0590. call the registry at 800-231-3769.

Be a Bone Marrow Donor For those patients diagnosed with a fatal blood disorder, bone marrow transplantation (BMT) is often the only chance of survival. Related donors provide suitable matches only 33 percent of the time. This leaves nearly 70 percent of patients without a match. The need is especially critical in racial and ethnic minority groups. Registering as a donor is simple. A blood sample is all you need to enter your tissue type into the National Marrow Donor Program (NMDP) computerized registry. If you are in good health and between the ages of 18 and 55, you can contact NMDP at 1-800-MARROW-2. They will send additional information, including the NMDP center nearest you. Give the Gift of Life! Other sites of interest: ASBMT™ American Society for Blood and Marrow Transplantation: www.asbmt.org International Bone Marrow Transplant Registry: www.isbmtr.org National Marrow Donor Program®: www.marrow.org Blood & Marrow Transplant Information Network: www.bmtinfonet.org Blood & Marrow Transplant Resources: www.BMTresources.org Over 140 Things You Need to Know about Your Autologous Bone Marrow or Stem Cell Transplant is available online at www.BMTresources.org or call 414-870-4850, ISBN# 0-9768060-0-2/Price: $11.95. Contains over 140 invaluable tips to help transplant patients sail through their procedures.

17 Would you like your treatment center to become part of the referral system for MDS patients and be designated as a Center of Excellence? To be recognized as a Center of Excellence, an institution must have the following: ■ An established university (or equivalent) program ■ Ongoing research, including ■ Documentation of peer-reviewed publications in the field ■ Recognized morphologic expertise in MDS Institutional Review ■ The ability and intention to register patients in the MDS ■ Available cytogenetics and/or molecular genetics ■ Board–approved clinical trials International Registry database Please contact the Foundation for further information and an application form for your center. The following centers have qualified as MDS Centers of Excellence:

UNITED STATES ILLINOIS Tufts University Memorial Sloan-Kettering Loyola University Chicago School of Medicine Cancer Center ALABAMA Cardinal Bernardin New England Medical Center New York, New York University of Alabama Cancer Center Boston, Massachusetts Stephen D. Nimer, MD at Birmingham Maywood, Illinois Kellie Sprague, MD Mount Sinai Comprehensive Cancer Center Scott E. Smith, MD, PhD MICHIGAN School of Medicine Birmingham, Alabama New York, New York Robert H. Lurie Barbara Ann Karmanos James M. Foran, MD Lewis R. Silverman, MD Comprehensive Cancer Center Cancer Institute ARIZONA of Northwestern University Wayne State University New York Medical College/ Feinberg School of Medicine Westchester Medical Center Mayo Clinic Hospital Detroit, Michigan Chicago, Illinois Zalmen A. Arlin Cancer Center Phoenix, Arizona Charles A. Schiffer, MD Olga Frankfurt, MD Valhalla, New York James L. Slack, MD William Beaumont Hospital Rush University Karen Seiter, MD University of Arizona Cancer Center Medical Center North Shore University Hospital Arizona Cancer Center Royal Oak, Michigan Chicago, Illinois Ishmael Jaiyesimi, MD Lake Success New York Tucson, Arizona Stephanie A. Gregory, MD Steven L. Allen, MD Daruka Mahadevan, MD, PhD Jamile Shammo, MD MINNESOTA Roswell Park Cancer Center CALIFORNIA University of Chicago Mayo Clinic Buffalo, New York Rochester, Minnesota Cedars-Sinai Medical Center Medical Center Minoo Battiwala, MD David P. Steensma, MD UCLA School of Medicine Chicago, Illinois St. Vincent’s Los Angeles, California Richard A. Larson, MD MISSOURI Comprehensive Cancer Center H. Phillip Koeffler, MD New York, New York INDIANA Washington University City of Hope Azra Raza, MD Indiana University School of Medicine National Medical Center Siteman Cancer Center University of Rochester Medical Center Duarte, California St. Louis, Missouri Cancer Center Indianapolis, Indiana Stephen J. Forman, MD John F. DiPersio, MD, PhD Rochester, New York Larry Cripe, MD John M. Bennett, MD Stanford University NEBRASKA Medical Center MARYLAND Weill Medical College University of Nebraska Stanford, California of Cornell University Johns Hopkins University Medical Center Peter L. Greenberg, MD School of Medicine New York Presbyterian Hospital Omaha, Nebraska New York, New York UCLA Center for Health Science Baltimore, Maryland Lori Maness, MD Eric J. Feldman, MD UCLA School of Medicine Steven D. Gore, MD Los Angeles, California Charles S. Hesdorffer, MD NEW JERSEY NORTH CAROLINA Gary J. Schiller, MD National Heart, Lung, The Cancer Center of Hackensack Duke University University of Southern California and Blood Institute University Medical Center Medical Center Hackensack, New Jersey Keck School of Medicine Bethesda, Maryland Durham, North Carolina Stuart Goldberg, MD Los Angeles, California Elaine Sloand, MD Carlos M. deCastro, MD Allen S. Yang, MD, PhD University of Maryland NEW MEXICO Wake Forest University Greenebaum Cancer Center FLORIDA University of New Mexico School of Medicine Baltimore, Maryland Health Sciences Center Comprehensive Cancer Center Mayo Clinic Maria R. Baer, MD Albuquerque, New Mexico Winston-Salem, North Carolina Jacksonville, Florida Ivana Gojo, MD Robert Hromas, MD Bayard L. Powell, MD Alvaro Moreno-Aspitia, MD University of South Florida MASSACHUSETTS NEW YORK OHIO H. Lee Moffitt Cancer Center Dana-Farber Albert Einstein College of Cleveland Clinic Foundation and Research Institute Cancer Institute Medicine Cancer Center Taussig Cancer Center Tampa, Florida Boston, Massachusetts Bronx, New York Cleveland, Ohio Alan F. List, MD Richard M. Stone, MD Amit Verma, MD Jaroslaw Maciejewski, MD, PhD

18 OREGON WASHINGTON, DC BELGIUM Rigshospitalet National Oregon Cancer Center at Oregon Georgetown University Hospital AZ Sint-Jan AV University Hospital Health and Science University Lombardi Comprehensive Brugge, Belgium Copenhagen, Denmark Portland, Oregon Cancer Center Dominik Selleslag, MD Lars Kjeldsen, MD, PhD Washington, D.C. University of Århus PENNSYLVANIA University Hospital Leuven Ekatherine Asatiani, MD Leuven, Belgium The University Hospital The Western Pennsylvania Michel Delforge, MD, PhD Århus, Denmark Cancer Institute WISCONSIN Johan Lanng Nielsen, MD, PhD Pittsburgh, Pennsylvania Medical College of Wisconsin BRAZIL James M. Rossetti, DO Bone Marrow AC Camargo Hospital– FRANCE Thomas Jefferson University Transplant Program Cancer Center Centre Henri Becquerel Kimmel Cancer Center Milwaukee, Wisconsin São Paulo, Brazil Rouen University Philadelphia, Pennsylvania Parameswaran Hari, MD Luiz Fernando Lopes, MD, PhD School of Medicine Rouen, France Emmanuel C. Besa, MD University of Wisconsin Hemocentro da UNICAMP Aspasia Stamatoullas, MD University of Pennsylvania Madison Medical School University of Campinas Cancer Center Madison, Wisconsin Campinas, Brazil Centre Hospitalier Philadelphia, Pennsylvania Mark B. Juckett, MD Irene Lorand-Metze, MD Universitaire (CHU) de Angers Service des Maladies du Sang Selina Luger, MD Serviço de Hematologia do Angers, France UPMC Cancer Centers OUTSIDE THE Hospital das Clinicas da Norbert Ifrah, MD University of Pittsburgh UNITED STATES Faculdade de Medicina da Cancer Institute Universidade de São Paulo Centre Hospitalier Universitaire Pittsburgh, Pennsylvania AFRICA São Paulo, Brazil (CHU) de Grenoble Anastasios Raptis, MD Constantiaberg Medi-Clinic Elvira R.P.Velloso, MD, PhD Grenoble, France Stellenbosch University Jean-Yves Cahn, MD TENNESSEE Universidade Federal de Ceará and Tygerberg Academic Hospital Ceará, Brazil Centre Hospitalier St. Jude Children’s Cape Town, South Africa Fernando Barroso Duarte, MD Universitaire (CHU) de Limoges, Research Hospital Peter Jacobs, MD, PhD Hôpital Dupuytren Memphis, Tennessee Hôpital Aziza Othmana CANADA Limoges, France Gregory Hale, MD Dominique Bordessoule, MD Tunis, Tunisia Princess Margaret Hospital TEXAS Balkis Meddeb, MD Toronto, Ontario, Canada Centre Hospitalier Karen Yee, MD Universitaire de Nancy Cancer Care Centers University of Cape Town Nancy, France of South Texas Groote Schuur Hospital Toronto Sunnybrook Agnés Guerci-Bresler, MD, PhD San Antonio, Texas Cape Town, South Africa Regional Cancer Centre Roger Lyons, MD Nicolas Novitzky, MD, PhD Toronto, Ontario, Canada Hôpital Avicenne/ University Paris XIII Southwest Regional Richard A. Wells, MD Bobigny, France Cancer Center ARGENTINA University of Toronto Pierre Fenaux, MD Austin, Texas Sanatorio Guemes Hospital for Sick Children Richard Helmer, III, MD Buenos Aires University Toronto, Ontario, Canada Hôpital Claude Huriez, Buenos Aires, Argentina CHU Lille Service University of Texas Yigal Dror, MD Marcelo Iastrebner, MD des Maladies du Sang MD Anderson Cancer Center CHINA Lille, France Houston, Texas AUSTRALIA Institute of Hematology Guillermo Garcia-Manero, MD Bruno Quesnel, MD and Blood Diseases Hospital Hagop Kantarjian, MD Peter MacCallum Hôpital Cochin/ Cancer Institute Chinese Academy of University Paris V University of Texas University of Melbourne Medical Sciences Southwestern Medical Center Paris, France East Melbourne, Australia Tianjin, China Francois Dreyfus, MD Dallas VA Medical Center John F. Seymour, MD Zhijian Xiao, MD Dallas, Texas Hôpital Saint Louis/ Simrit Parmar, MD University of Tasmania CZECH REPUBLIC University Paris VII Royal Hobart Hospital Institute of Hematology Paris, France WASHINGTON Hobart, Tasmania, Australia & Blood Transfusion Christine Chomienne, MD, PhD Raymond M. Lowenthal, MD Fred Hutchinson Prague, Czech Republic Institut Paoli-Calmettes Cancer Research Center AUSTRIA Jaroslav Cermák, MD, PhD Marseille, France Seattle, Washington Norbert Vey, MD Joachim Deeg, MD University Hospital of Innsbruck DENMARK Innsbruck, Austria Seattle Cancer Care Alliance Odense University Hospital GERMANY University of Washington Reinhard Stauder, MD The University of Georg-August-Universität Seattle, Washington University of Vienna Southern Denmark Göttingen Elihu H. Estey, MD Vienna, Austria Odense, Denmark Göttingen, Germany John A. Thompson, MD Peter Valent, MD Gitte Birk Kerndrup, MD Detlef Haase, MD, PhD

19 Hannover Medical School HUNGARY Takeda General Hospital THAILAND Medizinische Hochschule Semmelweis University Kyoto, Japan King Chulalongkorn Memorial Hospital Hannover School of Medicine Yataro Yoshida, MD Pathumwan, Bangkok, Thailand Hannover, Germany Budapest, Hungary Tokyo Medical College Tanin Intragumtornchai, MD Arnold Ganser, MD Judit Várkonyi, MD, PhD Tokyo, Japan Heinrich-Heine Universität Kazuma Ohyashiki, MD TURKEY Düsseldorf University Hospital IRELAND Ankara University Düsseldorf, Germany Adelaide and THE NETHERLANDS School of Medicine Hospital Ulrich Germing, MD Meath Hospital University Medical Center Ankara, Turkey Johann Wolfgang Goethe Dublin, Ireland Nijmegen St. Radboud Osman Ilhan, MD Universität Helen Enright, MD Nijmegen, The Netherlands Frankfurt Main, Germany Theo J.M. de Witte, MD, PhD UKRAINE Johannes Atta, MD ISRAEL Vrije Universiteit Medical Center Research Center for Radiation Medicine Kiev, Ukraine MLL Münchner Tel-Aviv Sourasky Amsterdam, The Netherlands Dimitry Bazyka, MD Leukämielabor Medical Center Gert J. Ossenkoppele, MD, PhD Munich, Germany Tel-Aviv, Israel Moshe Mittelman, MD POLAND UNITED KINGDOM Saarland University Jagiellonian University King’s College Hospital Medical Center ITALY Collegium Medicum University of London Homburg/Saar, Germany Centro di Riferimento Kraków, Poland London, United Kingdom Ulrich Mahlknecht, MD, PhD Oncologico di Basilicata (CROB) Aleksander Skotnicki, MD, PhD Ghulam J. Mufti, MD St. Johannes Hospital Rionero in Vulture (PZ), Italy Leeds General Infirmary Heinrich-Heine Universität Pellegrino Musto, MD PORTUGAL The Leeds Teaching Hospitals Duisburg, Germany Istituto di Ematologia Hospital de Santa Maria Leeds, United Kingdom Carlo Aul, MD, PhD Lisbon, Portugal Universita’ Cattolica David T. Bowen, MD Joao F. Lacerda, MD Albert-Ludwigs- Sacro Cuore Queen Elizabeth Hospital Universität Freiburg Roma, Italy ROMANIA University Hospital Birmingham Freiburg, Germany Giuseppe Leone, MD NHS Trust Fundeni Clinical Institute Michael Lübbert, MD, PhD Maria Teresa Vosa, MD Charles Craddock, MD Universität Hamburg Bucharest, Romania University of Florence Radu Gologan, MD, PhD Royal Bournemouth Hospital Hamburg, Germany Azienda OSP Careggi Bournemouth, United Kingdom Nicolaus Kröger, MD, PhD Florence, Italy SAUDI ARABIA Sally Killick, MD Universitätsklinikum Valeria Santini, MD King Faisal Specialist Carl Gustav Carus University of Pavia Hospital & Research Centre Dresden, Germany Medical School Riyadh, Saudi Arabia Suzanne Fleischman Uwe Platzbecker, MD Pavia, Italy Mahmoud Deeb Aljurf, MD University Children’s Hospital Mario Cazzola, MD King Khaled University Hospital Memorial Fund for Freiburg, Germany University Tor Vergata King Saud University Charlotte Niemeyer, MD Ospedale S. Eugenio Ak Almomen, MD Patient Advocacy Universitätsklinikum Roma, Italy SPAIN A fund has been established by Benjamin Franklin Elisabetta Abruzzese, MD, PhD Berlin, Germany Hospital Universitario the MDS Foundation in memory of Wolf-Karsten Hofmann, MD, PhD JAPAN de Salamanca Suzanne Fleischman. Contributions Salamanca, Spain Kyoto University Hospital may be sent to the Foundation with GREECE Jesus F. San Miguel, MD Kyoto, Japan a notation designating the Suzanne Patras University Hospital Takashi Uchiyama, MD Hospital Universitario La Fe Patras, Greece Valencia, Spain Fleischman Memorial Fund for Nicholas C. Zoumbos, MD Nagasaki University Hospital Miguel A. Sanz, MD, PhD Patient Advocacy. School of Medicine University General Atomic Bomb Disease Institute Hospital Universitario New donations have been made by: Hospital Attikon Vall d’Hebron Laboratorio Nagasaki City, Japan Edward Fleischman Athens, Greece Masao Tomonaga, MD del Citologia-Citogénetica Theofanis Economopoulos, MD Barcelona, Spain Prescott, Arizona Nippon Medical School Maria Teresa Vallespi-Sole, MD, PhD University of Athens Tokyo, Japan Daniel and Sandra Linn Laikon Hospital Kiyoyuki Ogata, MD, PhD La Jolla, CA Athens, Greece SWEDEN Nora Viniou, MD Saitama Medical Karolinska Institutet Roslyn Raney School Hospital Huddinge University Hospital Melo Park, CA Morohongo, Iruma, Japan Stockholm, Sweden Akira Matsuda, MD Eva Hellström-Lindberg, MD, PhD

20 Information on Clinical Trials

International Clinical a day or week). In this phase researchers also begin to determine the drug’s safety. New Clinical Study Trials: An Update The phase I trial is normally conducted in healthy adults and enrolls only a small Johnson & Johnson Pharmaceutical NATIONAL CANCER INSTITUTE TRIALS number of people. Research & Development is currently As we go to press the National Cancer recruiting US sites for a new clinical Phase II. Patients with the disease receive Institute (NCI) has listed more than 100 research study for the investigational the drug at dose levels determined in the clinical trials that focus on Myelodysplastic use of Epoetin alfa in patients with earlier phase. The phase II trial begins to syndromes. Full study information on IPSS low or intermediate-1 risk Myelo- determine the effectiveness of the drug and these trials is available at www.nci.nih.gov. dysplastic Syndromes. If you see provides more information about its safety. This information includes basic study newly diagnosed MDS patients and information, study lead organizations, study Phase III. The drug is tested alone or would like additional information sites, and contact information. To access against an approved standard drug. The regarding this clinical research study, the information: typical phase III trial enrolls a large number please contact The MDS Foundation ■ Log on to www.nci.nih.gov of patients. If it is a comparison trial, patients at 800-MDS-0839. may be randomly assigned to receive either ■ Click on “Finding Clinical Trials” the new drug or the standard intervention. ■ On the next screen look for “Ways to Find Phase IV. In phase IV the drug, already Clinical Trials” and approved by the FDA and available to the Important ■ Click on “Search for Clinical Trials” public, undergoes continued evaluation. The phase IV designation is rare. Some Research Study ■ Click on “Type of Cancer” and type in trials—screening studies evaluating ‘myelodysplastic syndromes’ Opportunity supportive care or prevention—are not ■ Hit search conducted in phases. In these trials a group Researchers at the H. Lee Moffitt Cancer Center and Research Institute in This search will provide you with all the following a certain disease combating Tampa, FL are looking for people who trials currently underway in MDS. You may strategy, such as a detection method, is have recently been diagnosed with also sort by trials that only focus on treatment compared to a control group. MDS to participate in a research study or trials that only focus on supportive care. designed to better understand why To view listings of additional studies New Research people get myelodysplastic syndrome. you can log onto www.clinicaltrials.gov. Specifically, researchers are studying a You can also contact 1-800-4-CANCER Protocol Listings part of the chromosome called the for more information. The MDS Foundation wants you to know telomere to see if telomeres are shorter If you are an MDS patient, you may wish about clinical trials of investigational in people with MDS as compared to to discuss a trial with your primary treating treatment options for patients with MDS and people who don’t have MDS. A specific physician to see if you qualify as a candidate. has updated its International Clinical Trials gene, called human telomerase reverse Clinical trials study new interventions list on our website and for distribution. transcriptase, or hTERT, will also be (drugs or procedures) to evaluate their safety For a detailed listing featuring new studied, to see if hTERT is related to and effectiveness in humans. Trials follow a protocols visit http://www.mds-foundation.org, telomere length. People who participate careful set of steps, allowing for the email [email protected] or in this study will be asked to complete systematic gathering of information to call 800-MDS-0839 and the current clinical a questionnaire and provide a blood answer questions and confirm hypotheses trials will be sent to you under separate cover. sample. Participation in this research that were formed earlier, in either laboratory Clinical trials often have very specific study will not in any way affect an experiments or preliminary trials. eligibility requirements. Please talk with your individual’s medical care or MDS A clinical trial falls into one of four phases: doctor to help decide which, if any, trials treatment options. To find out more information about this Phase I. This is the first time a drug is used might be right for you. important research study, please contact in humans. The trial is designed to Please note that the information is Kristen Jonathan at 813-745-8395 or determine dosage, route of administration provided strictly as a resource and is not an email [email protected]. (oral, intravenous, or by injection), and endorsement of any physician, institution or schedule of administration (how many times treatment.

21 Clinical Research Trial Clinical Research/Trial with Lonafarnib – Now Open for Accrual For An Oral, At-Home A Pivotal Randomized Study of Lonafarnib (SCH66366) versus Placebo in the Treatment Option Treatment of Subjects with Myelodysplastic Syndrome (MDS) or Chronic Myelomonocytic Leukemia (CMML) Who Are Platelet Transfusion Dependent Learn More About P02978 With or Without Anemia (Protocol No. P02978) The MDS Foundation wants you to Study Background ● Lonafarnib (SCH66336) is a potent, orally bioavailable, specific inhibitor of farnesyl transferase. As a farnesyl transferase inhibitor (FTI), know about clinical trials of investigational Lonafarnib prevents the farnesylation of specific target proteins, including RAS, which are involved in the regulation of cellular proliferation. Preclinical data have documented activity of Lonafarnib against numerous neoplastic cell lines in vitro, including several derived from subjects treatment options for patients with MDS. In with myeloid and lymphoid leukemias. Lonafarnib has also inhibited the growth of primary leukemic cells derived from subjects with CMML. the current clinical research trial, all patients These data suggest that Lonafarnib may have clinical efficacy against a variety of hematologic malignancies and deserves further study will receive therapy with Lonafarnib, an ● This trial P02978 is designed to determine whether Lonafarnib can improve patient outcomes in MDS investigational drug that is being evaluated Key Eligibility Criteria ● Platelet transfusion-dependent MDS or CMML patients with or without anemia diagnosed with de novo disease as confirmed by for treating patients with MDS or CMML who bone marrow aspirate have been regularly receiving at least 1 and Additional Eligibility Criteria not more than 8 platelet transfusions every ● Diagnosed MDS as classified by the French-American-British ● No current therapy with any drugs for the treatment of MDS/CMML other Classification (FAB) and defined as refractory anemia (RA), than best supportive care within 12 weeks prior to randomization 4 weeks. The medicine is taken by mouth at refractory anemia with ringed sideroblasts (RARS), refractory ● ECOG performance status 0 to 2 anemia with excess blasts (RAEB), and refractory anemia ● home, and although patients will be with excess blasts in transformation (RAEB-T), or chronic Sexually active women of childbearing age will need to use adequate birth myelomonocytic leukemia (CMML) control methods while in the study and will be required to maintain this monitored closely, routine hospital stays are method throughout the study ● No prior therapy with farnesyl transferase inhibitors not required. About the MDS Foundation: The MDS P02978 Schema Foundation is a publicly supported, multi- 8-Week Retrospective Screening Phase disciplinary, international organization Day –28: Review of Eligibility and Informed Consent devoted to the prevention, treatment, and study of MDS. The Foundation has 4-Week Prospective Screening Phase conducted international symposia and has Day –1: Review of Eligibility and Randomization/Stratification established an international information Placebo+Best Supportive Care Lonafarnib+Best Supportive Care network that provides patients with referrals Double-Blind (DB) Treatment for 3 Cycles (=3 4 weeks) or until unacceptable toxicity or transformation to AML to the MDS Foundation’s Centers of × Excellence worldwide, contact names for End of Cycle 3 Assessment or End of Double-Blind (DB) Treatment Assessment Nonresponders: Those subjects who have not achieved platelet transfusion independence for at least 4 weeks by end of Cycle 3 available programs, and information about new research and treatment options. The Off Study Due to Unacceptable Responders at Nonresponders Nonresponders Toxicity or Transformation to End of Cycle 3 on Placebo on Lonafarnib Foundation also provides educational support AML Before or at End of of (unblinded after completion (unblinded after completion Cycle 3 of DB Treatment DB Treatment of Cycle 3 of DB treatment) of Cycle 3 of DB treatment) to both physicians and patients. Information regarding platelet Continuation of Will be offered open-label treatment For more information about clinical and RBC transfusions, infections double-blind phase with Lonafarnib at discretion of and their treatment, active until unacceptable toxicity investigator with collection of safety trials with Lonafarnib, call the MDS Foun- bleeding events will be followed or transformation information until unacceptable toxicity until 16 weeks after randomization to AML or transformation to AML dation at 1-888-813-1260 (outside the US

In case participation in open-label 609-298-7741) Follow-up for survival Follow-up for survival Follow-up for survival treatment is not agreeable or after every 12 weeks every 12 weeks every 12 weeks completion of open-label treatment: Talk to your doctor to decide if this trial is after study completion after study completion after study completion Follow-up for survival every 12 weeks suitable for you.

About the MDS Foundation: The MDS Foundation is a publicly supported, multidisciplinary, international organization devoted to the prevention, treatment, and study of MDS. The Foundation has (Clinical trial site list on next page) conducted international symposia and has established an international information network that provides patients with referrals to centers of excellence, contact names for available programs, and information about new research and treatment options. The Foundation also provides educational support to both physicians and patients. For more information about the MDS Foundation, visit www.mds-foundation.org.

Patient enrollment needed. For more information please call 1-888-813-1260 (Outside the US: 609-298-7741) or visit www.mds-foundation.org. the myelodysplastic syndromes foundation, inc.

Schering-Plough is the sponsor of this trial. This ad was supported by a grant from Schering-Plough. Novartis has provided the MDS Foundation with an educational grant to support the Foundation’s work.

22 Lonafarnib Clinical Trial Site List (at date of publication) UNITED STATES University of Texas Cardio Diagnostico SA Alvin and Luis Lapidus Southwestern Medical Center Barranquilla, Colombia Cancer Institute Dallas, TX Miguel Urina, ME Robert Collins, MD Baltimore, MD Ecuador Stephen Noga, MD James A. Haley Hospital Carlos Andrade Marin Veterans Hospital University of Minnesota Quito, Ecuador Tampa, FL Minneapolis, MN Jose Paez, MD Hussain Saba, MD Mark Reding, MD Hospital SOLCA Guayaquil University of South California, Georgia Cancer Specialists Guayaquil, Ecuador Norris Cancer Center Tucker, GA Bella Maldonado, MD Los Angeles, CA Mansoor Saleh, MD Dan Douer, MD Cruz Rojo Ecuatoriana New York Presbyterian Hospital Quito, Ecuador Mayo Clinic Hospital New York, NY Juan Sghirla, MD Phoenix, AZ Eric Feldman, MD James Slack, MD El Salvador New York Medical College Scripps Cancer Center Hospital Nacional Rosales Valhalla, NY La Jolla, CA San Salvador, El Salvador Karen Seiter, MD James Mason, MD Hector Valencia, MD Bethesda Research Center Boynton Beach, FL CANADA / LATIN AMERICA Peru Roger Brito, MD Canada Hospital Nacional Edgardo Rebaglianti University of Massachusetts Cross Cancer Institute Medical Center Jesus Maria, Peru Edmonton, Alberta Juan Navarro, MD Worcester, MA Robert Turner, MD Azra Raza, MD Puerto Rico Sunnybrook Regional Cancer Center Doctors Cancer Center Toronto, Ontario Manati, Puerto Rico Thank You to Our Rena Buckstein, MD Kenel Fernandez-Barbosa, MD Pharmaceutical Princess Margaret Hospital San Juan Hospital Supporters Toronto, Ontario San Juan, Puerto Rico Andre Claudius Schuh, MD Luis Baez-Diaz, MD We would like to thank our San Juan VA Medical Center pharmaceutical supporters for their Colombia San Juan, Puerto commitment to the Foundation and Fundacion Santa Fe de Bogota William Caceres, MD its work. They have contributed in Bogota, Colombia the form of educational grants, Monica Duarte Romero, MD EUROPE which maintains not only this newsletter but also the develop- Instituto de Cancerologica SA Austria ment of the MDS homepage on the Medellin, Colombia University Clinic of Vienna World Wide Web, the Center of Amado Karduss, MD Vienna, Austria Excellence program, continuing Hospital Militar Central Peter Valent, MD medical education programs, the Bogota, Colombia Hanusch Hospital of Vienna Patient Registry, and the Benjamin Ospino, MD Vienna, Austria dissemination of patient information. Thomas Noesslinger, MD Michael Pfeilstoecker, MD

23 Czech Republic Institute of Hematology Purchase MDS Awareness Pins Prague, Czech Republic The MDS Foundation has enameled lapel Jaroslav Cermak, MD pins for you to wear with pride and to University Hospital Olomouc increase public awareness about MDS. The Olomouc, Czech Republic pins are available in either a rectangular or Jana Vondrakova, MD circular design with a $3.99 donation to The MDS Foundation. To order your pins, call 1-800-MDS-0839. Germany The pins were created especially for The MDS Foundation to St. Johannes Hospital contribute to the effort to help people worldwide living with MDS. Duisburg, Germany Your donation will help increase awareness of this little known Aristoteles Giagounidis, MD disease, which is the most common of the hematologic Heinrich-Heine malignancies. Please ask your family and friends to wear Universitaet these pins in support of our mission! Düsseldorf, Germany Ulrich Germing, MD Universitätklinikum Göttingen Learn More About MDS: Göttingen, Germany Join the Journey to Hope for MDS Detlef Haase, MD ■ Medical School Muenster MDS is a puzzling, life-threatening G-CSF or GM-CSF. There are now Muenster, Germany group of diseases of the bone marrow three drugs approved for the treatment ® Wolfgang E. Berdel, MD for which there are no easy cures or of MDS: Vidaza (azacitidine), quick remedies. Dacogen® (decitabine), and Revlimid® University Hospital Essen ■ The most common of all the cancers (lenalidomide). At present, there are Essen, Germany related to the blood system, it is two FDA-approved drugs for the Ulrich Duehrsen, MD estimated there are more than 30,000 treatment of transfusion-dependent Italy new MDS cases each year in the United iron overload: Exjade® (deferasirox) and ® Policlinico Tor Vergata States alone. We believe this is vastly Desferal (deferoxamine). None of Roma, Italy underestimated. these are curative. ■ Despite more than three decades of Sergio Amadori, MD How to Help: dedicated research, the causes of MDS ASL 4 Prato ■ remain largely unknown. Bone marrow transplantation is often Prato, Italy ■ MDS is largely unknown to the the only chance of survival. Nearly 70% Angelo DiLeo, MD general public. of the patients are without a match. The need is especially critical in racial IRCCS, Casa Sollievo ■ For roughly 30% of the patients diag- and ethnic minority groups. della Sofferenza nosed with MDS, these diseases will Giovanni Rotando, Italy progress to acute myeloid leukemia ■ As a not-for-profit organization, the Pellegrino Musto, MD (AML), a type of bone marrow MDS Foundation depends entirely on Spain malignancy which does not respond public funding in the form of individual well to chemotherapy. gifts, donations from individual and Hospital Universitario corporate entities, and membership Salamanca, Spain ■ Until recently treatment consisted fees to further our work. Consuelo Del Canizo, MD only of supportive care including blood trans-fusions (red blood cells or ■ To learn how to support the MDS platelets), and treatment with growth Foundation, go to the Foundation’s factors like erythropoietin (EPO) with website at www.mds-foundation.org.

24 Educational Resources

The Foundation Resource Center is Now Online!

This educational center is designed to provide clinicians, researchers, and other healthcare professionals with a compre- hensive source for the latest information and educational programming on the myelo- dysplastic syndromes. In the Conference section of our website you can view materials presented at MDS conferences or register for upcoming MDS-related symposia.

Understanding MDS: A Primer for Segment 2: Segment 4: Practicing Clinicians Clinical Presentation, Anemia in MDS: Survival, QoL, Diagnosis & Pathology Visit www.mds-foundation.org and and Treatment Options click on The MDS Foundation Resource Segment 2 provides insight into the COMING SOON! Center to take advantage of this compre- clinical picture of adult and pediatric MDS, hensive program, and other informative primary and secondary MDS, FAB and WHO This multi-segment program will allow programs coming soon, designed to provide Classification system, and rationale for the participants to choose the segments that you with tools and information that will proposed MDS pediatric classification system. interest them and to learn at their own assist you in administering the best care to pace. Segments may be completed via a your patients. written program, on-line in our techno- Written programs are available in logically advanced MDS Foundation Spanish, French, Italian, German and Educational Center, or via CD-ROM on their Japanese. personal computer. The program is approved for 1 hour of CME credit upon completion. There is no charge for this educational activity. The Myelodysplastic Syndromes Foun- dation strives to serve as an effective conduit for information regarding the most updated treatment options, clinical studies, referrals to Centers of Excellence, and other Segment 3: information concerning MDS. Please book- Ineffective Hematopoiesis: mark our site, www.mds-foundation.org, Considerations in Diagnosis and check back frequently for new, and Treatment informative programs. Segment 1: Segment 3 provides insight into the The Past and Present In MDS pathogenic mechanisms that contribute to Segment 1 provides insight into the the development of MDS, including the history of MDS, development of the MDS altered bone marrow microenvironment of classification and prognostic systems, and a MDS in terms of cells, cytokines, growth glimpse into the future of MDS diagnosis, factors, receptors, and microvasculature; Genzyme has provided the dyserythropoiesis in MDS, and therapeutic MDS Foundation with an educational grant research and treatment. to support the Foundation’s work. targets and approved drugs for the treatment of MDS.

25 Help the Foundation and Buy Your MDS Textbooks From Us!

Myelodysplastic etiologic insults like aging, toxic exposure, (MDS)— identifying effective therapeutic Syndromes: infections and auto-immunity. Among regimens, adverse environmental and Clinical and Biological infectious causes alone, pneumonia could genetic factors, and efficient modalities of Advances be the result of a variety of possible supportive care that improve patient survival Peter L. Greenberg, MD pathogens including bacterial, viral, and enhance quality of life. Stanford University tuberculous or fungal agents. Similarly, MDS Medical Center cannot be treated as a single disease. Myeloproliferative Hardback, Nov. 2005/320 pp., illus. Attempts to harness the inherent complexity Disorders: Biology ISBN: 0521496683/$125.00** of MDS by devising “classifications” which and Management group the various syndromes as one disease Cambridge University press Edited by: is as misguided as saying that a pneumonia Richard T. Silver, MD; As the current major comprehensive is not infectious because it did not respond Ayalew Tefferi, MD reference on all aspects of the clinical to antibiotics. Progress in the field will occur classification underlying pathogenetic mecha- faster when we re-analyze this premise. October 2007/240 pp., illus. nisms and treatment of the myelodysplastic Therefore, until a clearer picture of the ISBN: 9781420061628/$161.96** syndromes, Myelodysplastic Syndromes disease emerges it is best to treat each of CRC Press: 800-272-7737 stands out as the definitive text on the the MDS syndromes as a separate entity. Myeloproliferative disorders, written by genetics, pathophysiology, and clinical Having no classification is better than a international renowned experts in the field, management of this wide range of syndromes. misleading one. This book is our attempt to examines: Authored by international experts, this book define the most crucial questions related to – New and developing diagnostic protocols provides a state-of-the-art update of the MDS that need to be addressed immediately current status and recent advances in the and algorithms and supportive care through logic, analysis and rigorous regimens field. The chapters cover all aspects of the experimentation. If the emerging problems myelodysplastic syndromes, from an in-depth appear daunting, then instead of being – The evolution and classification of recent analysis of the multifactorial nature of this overwhelmed by them, we should follow the myeloproliferative disorders disease, including a careful assessment of advice of the great 20th century thinker – Advancements and the implications stromal, immunological and stem cell Antonio Gramsci, “pessimism of the intellect arising from clinical care and practice abnormalities, to a review of recent molecular must be faced with the optimism of will”. and cytogenetic discoveries and insights. – The activating JAK2V617F developed in a chapter by top experts This book will be a valuable resource to The Myelodysplastic – The overlap between myeloproliferative clinicians and researchers who wish to learn Syndromes more about myelodysplastic syndromes. Pathobiology and disorders and myelodysplastic syndromes Clinical Management – The importance of histopathology and cyto- Myelodysplastic (Basic and Clinical genetics on understanding these diseases Syndromes & Secondary Oncology Series/27) With the recent discovery of JAK2 Acute Myelogenous mutations in myeloproliferative disorders, Leukemia: Directions Edited by: medical science has taken a revolutionary for the New Millennium John M. Bennett, MD stride forward toward understanding the (Cancer Treatment James P. Wilmot Cancer Center pathogenesis of these diseases. This new and Research) of the University of Rochester, Rochester, New York, U.S.A. advancement translates not only to a more Edited by: rapid and reliable diagnosis, but also Azra Raza, MD; Suneel D. Mundle, PhD May 2002/528 pp., illus. allows groundbreaking research into the June 2001/278 pp., illus. ISBN: 0-8247-0782-6/$165.00** development of new therapeutics. Written ISBN: 0792373660/$198.00** CRC Press. 800-272-7737 in an easy-to-follow text myeloproliferative Springer Science+Business Media, Inc. This reference provides a comprehensive disorders gives the practicing clinician a Myelodysplastic syndromes are to the overview of the latest research detailing single source answer to classification, bone marrow what pneumonia is to the lungs; the etiology, epidemiology, treatment, and diagnosis, management, and recent advances the response of an organ to a variety of detection of myelodysplastic syndromes in this disorder.

26 100 Questions & Highlights of Latest 5. Valent P et al. Iron Overload in Answers About myelodysplastic syndromes (MDS)- Myelodysplastic Literature in MDS diagnosis, management and response Syndromes criteria: a proposal of the Austrian MDS Suneel D. Mundle, PhD By: platform. Eur J Clin Invest. 2008; Jason Gotlib, MD, MS; Listed below are citations of some new 38:143–149. Lenn Fechter, RN, BSN publications relevant to MDS (pathogenesis, DIAGNOSIS AND PROGNOSIS: clinical characterization, management, etc.). December 2007/172 pp., illus. 1. Garcia-Manero G et al. A prognostic score ISBN: 9780763753337 /$19.95** To access the complete article log on to www.pubmed.gov. for patients with lower risk myelo- Jones and Bartlett Publishers: dysplastic syndrome. Leukemia. 2008; 800-832-0034; www.JBpub.com 22:538–543 MDS OVERVIEW AND PERSPECTIVES: Whether you’re a newly diagnosed 1. Kuendgen A and Lübbert M. Current A retrospective review of 856 cases with patient, a survivor, or loved one of someone status of epigenetic treatment in low/int-1 MDS at the MD Anderson suffering from MDS, this book offers help. myelodysplastic syndromes. Ann Hematol. Cancer Center, Houston, Tx, USA, showed The only text available to provide both 2008, Apr 5. [Epub ahead of print] 10% AML transformation with a mean follow up of 19.6 months. Low platelet the doctor’s and patient’s views, 100 The article provides perspective on count, anemia, older age, higher marrow Questions & Answers About Myelodysplastic epigenetic treatment modalities blast counts, poor-risk cytogenetics, and Syndromes, provides practical, authoritative highlighting inhibitors of DNA methyl higher serum ferritin were associated answers to 100 of the most common transferase and histone deacetylase. questions asked. Written with commentary with worse survival outcome. Attempts from actual patients, this is an invaluable 2. Itzykson R, Gardin C and Fenaux P. have been made to group patients in 3 resource for anyone struggling with the Meeting report: myelodyspalstic syn- categories with median survival of 80.3, medical, physical, and emotional turmoil of dromes at ASH 2007. Leukemia. 2008, 26.6 and 14.2 months, clearly demon- this disease. Mar 6 [Epub ahead of print] strating heterogeneity within the low/int-1 ASH 2007 overview. IPSS category. **All prices are in US dollars. 3. Giagounidis A et al. Practical recom- 2. van de Loosdrecht AA et al. Identification mendations on the use of lenalidomide in of distinct prognostic subgroups in low To order call MDS Foundation at the management of myelodysplastic and intermediate-1 risk myelodysplastic 1-800-MDS-0839. TERMS OF THE OFFER: syndromes. Ann Hematol. 2008;87: syndromes by flow cytometry. Blood. All individual orders must be prepaid by check or 345–352. 2008;111:1067–1077. money order or charged on Visa, Mastercard, or This comprehensive review provides Of note was the finding that in 60% of AmEx). Canadian residents, please add 7% GST. recommendations on selection of patients transfusion dependent or progressive Residents of CA and NY, please add local sales for lenalidomide therapy, laboratory disease patients, myeloid blasts expressed tax. Shipping and handling charges for North monitoring, course of treatment in different CD7 or CD56 in contrast to only 9% non- America are $6.00 for the first book and $1.75 situations, maintenance, and management transfusion dependent patients. for each additional book. Outside North America of neutropenia, thrombocytopenia and (only credit card orders accepted)—$9.00 for other adverse events associated with TREATMENT: first book; $5.00 for each additional book. lenalidomide treatment. 1. Moyo V et al. Erythropoiesis-stimulating agents in the treatment of anemia in 4. Jabbour E et al. Red blood cell myelodysplastic syndromes. Ann Hematol. transfusion and iron overload in the 2008, Mar 20 [Epub ahead of print] treatment of patients with myelo- This literature meta-analysis showed dysplastic syndromes. Cancer. 2008; improved erythroid response rates with 112:1089-1095. the institution of standardized response A comprehensive review of RBC evaluation criteria (IWG 2000) and transfusion burden in MDS, the potential comparable response with two adverse outcomes and compromised commonly used ESAs, epoetin alfa and survival associated with prolong RBC darbepoetin alfa. transfusions, and chelation therapy for the management of resultant iron overload.

27 2. Park S et al. Predictive factors of myelodysplastic syndromes. Leuk Res associated with proliferation, differentiation response and survival in myelodysplastic 2008, Feb 6 [Epub ahead of print] and DNA repair, while these genes were syndrome treated with erythropoietin and Post-transplant treatment with GM-CSF found to be repressed in nonresponders. G-CSF: the GFM experience. Blood. showed event free survival rates of 47% 2. Volpicelli P et al. Pregnancy in patients 2008;111:574–582. and 34% at 1 and 3 years respectively with myelodysplastic syndromes (MDS). This large study evaluated effects of ESAs with a median follow up of 22.8 months. Leuk Res. 2008 Mar 26 [Epub ahead of print] (Epo alfa, Epo beta and Darbepoetin alfa) Lenalidomide: This observational study over 15 years with or without GCSF in comparison with demonstrated occurrence of full term 5. Raza A et al. Phase 2 study of historic untreated controls to show that uneventful pregnancies in 5 cases within lenalidomide in transfusion-dependent different ESAs were comparable in eliciting 10 yrs from diagnosis of MDS in young low risk and intermediate-2-risk erythroid response, did not impact women with a median age of 28 yr (range myelodysplastic syndromes with karyo- leukemic transformation or survival. In fact, 26–29 yrs). in ESA responders the survival appeared to types other than deletion 5q. Blood. 2008;111:86–93. 3. Lin J et al. Methylation status of fragile be superior to the historical controls. histidine triad (FHIT) gene and its clinical Transfusion independence (TI) was seen impact on prognosis of patients with Demethylating Agents: in 25% of the total of 214 patients with myelodysplastic syndrome. Leuk Res. 3. Borthakur G et al. Activity of decitabine in low/int-1 MDS without del 5q abnormality 2008, Mar 14. [Epub ahead of print] patients with myelodysplastic syndrome who were treated with 10 mg oral FHIT methylation showed correlation with previously treated with azacitidie. Leuk lenalidomide daily or on days 1–21 of a the advanced disease by IPSS and Lymphoma. 2008;49:690–695. 28-day cycle. Median time to TI was 4.8 shorter survival. The study (N=14) showed activity of weeks and median duration of TI was 41 decitabine with overall response rate of weeks. The overall rate of Hematologic 4. Khan R et al. Hypomethylation and 28% (CR-3/14 and HI 1/14) and minimal improvement was seen in 43% patients. apoptosis in 5-azacytidine treated Gr 3–4 toxicities in MDS patients who Neutropenia and Thrombocytopenia were myeloid cells. Exp Hematol. 2008;36: previously failed treatment with the major adverse events. 149–157. azacitidine. 5-Azacytidine induced dose-dependent Farnesyl Transferase Inhibitors: apoptosis and hypomethylation was Allogeneic Transplant: 6. Kurzrock R et al. Phase I study of found in apoptotic fraction (41% 4. Castro-Malaspina H et al. Transplantation alternate-week administration of tipifarnib reduction in methylation status). No in remission improves the disease-free in patients with myelodysplastic syndrome. change in methylation was observed in survival of patients with advanced Clin Cancer Res. 2008;14: 509–514. non-apoptotic cells. Apoptosis seemed to myelodysplastic syndromes treated with Oral tipifarnib administered twice daily at involve both intrinsic mitochondrial myeloablative T cell-depleted stem cell escalating dose from 100 mg until MTD pathway and extrinsic pathway. transplants from HLA-identical siblings. for 8 weeks followed by maintenance, Biol Blood Marrow Transplant. 2008;14: showed OR of 26% (16 of 61 evaluable 458–468. patients) with CR-5% and HI-21%. Most Blood & Marrow The report describes experience with 49 common toxicity was myelosuppression. patients over a period of 20 years, who However, 20% patients did not have any Transplant News received hematopoietic stem cell side effects. Blood & Marrow Transplant Newsletter transplant after conditioning that included is published four times annually by chemotherapy in some patients. The PATHOBIOLOGY: BMT InfoNet. report demonstrates the potential of 1. Cortelezzi A et al. Bone marrow achieving long term remission (3 year glycophorin-positive erythroid cells of To subscribe, contact: post-transplant survival rate of 54%) in myelodysplastic patients responding to BMT InfoNet patients with earlier remission or second high dose rHuEPO therapy have a 2900 Skokie Valley Road, Suite B refractory cytopenia phase following different gene expression pattern from Highland Park, IL 60035 initial therapy. those of nonresponders. Am J Hematol. Toll free: 888-597-7674 5. Warlick ED et al. Myeloablative allogeneic 2008, Feb 13. [Epub ahead of print] Tel: 847-433-3313, Fax: 847-433-4599 bone marrow transplant using T cell Purified Gly (+) cells from the marrow of E-Mail: [email protected] depleted allografts followed by post- MDS patients responding to EPO therapy Web: www.bmtinfonet.org transplant GM-CSF in high risk had normal expression of genes

28 MDS Foundation Publications

MDS Handbooks Now Available in Multiple Languages New MDS Publications ■ Understanding Myelodysplastic Syndromes: A Patient Handbook Coming Soon...

■ A Caregivers Guide to Myelodysplastic Syndromes

■ What Does My Bone Marrow Do?

Patient Information & Available in the following languages:* Arabic Greek Polish Spanish Educational Materials English Hungarian Portuguese Turkish Available from The Czech Italian Russian MDS Foundation German Japanese ■ The MDS News

■ ■ Transfusion-Dependent Iron Overload and MDS: A Handbook for Patients MDS Essentials: The Foundation’s E-Newsletter ■ Patient Diary

■ Understanding Myelodysplastic Syndromes: A Patient Handbook

■ Transfusion-Dependent Iron Overload and MDS: A Handbook for Patients

■ Insurance and Reimbursement Resources for MDS Patients

■ Emerging Treatment Options for Adult MDS: A Clinical Perspective

■ Planned Giving Program: A Guide to Financial Planning

■ PBS Program — ( DVD) Healthy Body, Available in the following languages:** Healthy Mind: A Menace in the Blood Arabic French Italian Russian All of these materials are available free English German Japanese Spanish of charge from the Foundation. Czech Greek Polish Swedish Dutch Hungarian Portuguese

** The MDS Patient Handbooks will soon be available in the following languages: Dutch, Swedish. ** The Iron Overload booklets will soon be available in the following language: Turkish.

29 Contributions to the MDS Foundation

Gifts to the Foundation Ways to Support Us The MDS Foundation relies entirely on gifts and membership fees to further its work. We would like to acknowledge the generosity of the following individuals and organizations that The MDS Foundation is very grateful have recently provided gifts to the Foundation: for the heartfelt support of its donors. Our work as a non-profit organization Ed and Susan Johnson, Clifton, NJ Jamie Mark, New York City, NY depends on public funding and we United Way of New York City Benchmark Assisted Living, LLC hope that you include us as one of the On behalf of Ms. Lauren M. Hollander Wellesley, MA worthy charities that you support this Susan J. Ferber Weston E. Vivian, Ann Arbor, MI year. We have enclosed a pre- In memory of Dr. Jerome Ferber Arlene Stone, Hobe Sound, FL addressed contribution envelope to New York, NY make it easier. You will receive an Geoffrey Shandler, Montclair, NJ Dr. & Mrs. John M. Bennett, Rochester, NY MDS Foundation enamel lapel pin in Leonard A. Jewler, Washington, DC appreciation of your donation. Dr. Stuart Goldberg, Hackensack, NJ Noblis, Inc, Falls Church, VA All donations are tax-deductible. Norma Weinberg, Boynton Beach, FL Janine Kowack, Seattle, WA J. Houwerzijl, MD, The Netherlands Joan Stone, Joy Lenny, Hobe Sound, FL Joseph Artuso, Berwyn, PA Andrew Carrico IV, Stephanie Strout A Living Endowment Mr. & Mrs. Ed Vollenweider, Grosse Ile, MI El Cajon, CA Many families are affected by living with Mr. Hearst, New York, NY Allison, MacKenzie, Pavlakis the reality of MDS. There is an extraordinary Rajeev B. Prabhakar, Walnut Creek, CA Wright & Fagan, LTD, Carson City, NV way to contribute to the MDS Foundation Charles & Dorothy Bivona, North Merrick, NY Richard B. Frans, Agoura Hills, CA and support our mission of working as a resource for patients, families, and health- Chris and Amanda Meyer, Portland, OR Geoff and Sandy Goldworm, Jupiter, FL care professionals. Elena Trentin, Schio (Vicenza), Italy Gerry& Debbie Meyer, Great Falls, MT A commitment to donate to the Foundation Erick and Tracy Coleman, Tampa, FL Leo W. Seal Family Foundation on occasions of loss, birthdays and anniversary Bay St. Louis, MS remembrances can be made. Honor your Mike Edgley, Jupiter, FL Dr. Steven Gore, Baltimore, MD friends or family members on these Adele Buzzetti, New York, NY occasions with a donation, and The MDS Robert Weinberg and Spotlight Players, Plymouth, MI Foundation will send an acknowledgment to Rochelle Ostroff-Weinberg the recipient, recognizing the occasion. Citywide Banks, Aurora, CO Wynnewood, PA Earl Sims, Brierfield, AL Pepper Hamilton LLP, Philadelphia, PA A Living Endowment donation has been made in honor of: Ellis Baker Murov, New Orleans, LA Nathan E. Dranoff, Richmond, VA Zelaida Roa’s birthday Jean Speckhardt, Stroudsburg, PA Bevely Sebastian, Green Valley, AZ Henry Blume, Menlo Park, CA This donation was submitted by: Armando John C. Ballard, Irvine, CA Cruz, Jose & Elba Cruz, Jose & Carmen Bob and Priscilla Smolka, New York, NY Helen Hanson, Lombard, IL Garcia, John & Dulce Heinz, Hilda A. William and Rosemary Zumbiel Peggy Cherkasky, Rochester, NY Irola, Concepcion C. Jorge, Juan & Edgewood, KY Tamra Micco, Whitehouse Station, NJ Elva Lopez, Jorge & Oralia Parada, Delia Perez, Alfonso & Benita Rojas Ted and Shirley, Naples, FL Bard Urological Divisin, Covington, GA James W. Hester, Lilburn, GA Michael Briguglio, North Potomac, MD A Living Endowment donation has been made in honor of: Mary K. Miyawaki, Honolulu, HI Frances White, Raleigh, NC Dipti Shorey’s 15 year anniversary Myrna Pearlman, Longboat Key, FL Elizabeth Hickey, Vero, FL with The Capital Group Companies Steve Smotrich, Stockton, NJ Bob and Barbara Wolfe, Ringoes, NJ This $1,500 donation was submitted by: Claimetrics Management, LLC Ros Westlak, Stockton, NJ The Capital Group Companies Oklahoma City, OK Dr. Paul M. Nemiroff, Gibsonia, PA Charitable Foundation

30 In Memorium

A memorial fund has been established in the name of Jeffrey and Barbara Steele The J. Boyer Family A memorial fund has been established in the name of Mr. Wayne Barker Bethesda, MD Bethesda, MD Mr. Julian Clarke, Jr. Donations have been made in Mr. Barker’s memory by: Richard and Carol Harris Fred & Delphine Dougherty Donations have been made in Mr. Clarke’s memory by: North Potomac, MD Panacea, FL Bill & Denise Foor, Wes & Evelyn Foor, Denny & Dee Foor, Anthony P. Gross Freddie Mac Foundation David and Patrice Sysko, Wilmington, DE and Kevin & Dee Blume, Eureka, IL Ann Arbor, MI Matching Gifts A memorial fund has been established in the name of Princeton, NJ & Stuart, FL A memorial fund has been established in the name of Mr. Bill Condley Mrs. Lynn Bernstein A memorial fund has been established in the name of Donations have been made in Mr. Condley’s memory by: Donations have been made in Mrs. Bernstein’s memory by: Mr. Maner Bostick William and Joan Willett, Orangevale, CA Dr. and Mrs. Larry Hoffman Julie, Lisa, Susan, Cindy Donations have been made in Mr. Bostick’s memory by: Highland Park, IL and Family, Deerfield, IL A memorial fund has been established in the name of Dianne Nazareth, Charleston, SC A memorial fund has been established in the name of Mr. John T. Costelloe Donations have been made in Mr. Costelloe’s memory by: Mr. Arthur H. Baron A memorial fund has been established in the name of Donations have been made in Mr. Baron’s memory by: Mr. Donald Bridenstine Nancy Dillon Cocchiola Dino and Charlotte Genga West Hartford, CT Glastonbury, CT Alvin Benedict Barbara Duchovnay Donations have been made in Mr. Bridenstine’s memory by: Dr. and Mrs. Rudy Leidl Bill and Linda Wainright Las Vegas, NV Jenkintown, PA Dr. & Mrs. Leonard Berger Eugene and Califon, NJ Old Lyme, CT Debby, Brad and Spencer S. Solodar, D.D.S. Pikesville, MD Merrie Lou Kaminsky Kathryn Costelloe Kathy Fischer Abington, PA Neil Markowitz Edward and Selma Robertsdale, PA Long Valley, NJ Hoffman Estates, IL West Chester, PA Marvin and Marlene Block Zimmermann Iola Cimbalista Mary J. Kennedy Bud and Jane Smart Elkins Park, PA Janet Spiegelman Baltimore, MD Broad Top, PA Long Valley, NJ Lecanto, FL Elkins Park, PA Ray and Audrey Cowan Thomas H. Black, Jr. Carole Shaffer & Frank Cann Abington, PA Saxton, PA A memorial fund has been established in the name of Warrington, PA Barbara Rose Falrorth Mrs. Mary Ellen Davies Maureen McDonnell King of Prussia, PA A memorial fund has been established in the name of Donations have been made in Mrs. Davies’ memory by: Flourtown, PA Mr. Donald Robert Briggs Richard and Lois Noyes, Osprey, FL A memorial fund has been established in the name of Donations have been made in Mr. Briggs’ memory by: Mr. Walter S. Bittner Nancy Laskowski Laurie Ruhl, Ellen Mullinax A memorial fund has been established in the name of Donations have been made in Mr. Bittner’s memory by: Philadelphia, PA and Lois Rarick Mr. Dale DeSharone Frederick M. Trietsch Tampa, FL Beverly Crawford, Spring Park, MN Donations have been made in Mr. DeSharone’s memory by: Bryn Mawr, PA A memorial fund has been established in the name of Albert Silliman & Seija Halva Diana Metsisto A memorial fund has been established in the name of Lexington, MA Scituate, MA Ms. Lois Boesel Mr. Marvin Campbell Donations have been made in Ms. Boesel’s memory by: A memorial fund has been established in the name of Donations have been made in Mr. Campbell’s memory by: Kenneth and Linda Jacobs, Scandia, MN Mrs. Barbara Jean DeYoung Diana Checchi, Coal Township, PA Donations have been made in Mrs. DeYoung’s memory by: A memorial fund has been established in the name of Regina Taylor, Tucson, AZ Mrs. Nancy Margaret Booker A memorial fund has been established in the name of Donations have been made in Mrs. Booker’s memory by: Mrs. Lillian Catoggio A memorial fund has been established in the name of Javier and Traci Donatelli Bob, Evyan, Hilary Donations have been made in Mrs. Catoggio’s memory by: Mr. Robert Evans Poolesville, MD and Ross Koenig John Wilk, Jr. George and Linda Mayer Donations have been made in Mr. Evans’ memory by: The Hoy Booker Family Bethesda, MD Clifton, NJ Oakland, NJ Dr. Shanteri U. Nayak, Staff of Nuclear Medicine Dept., Seguin, TX Dr. & Mrs. Dennis McIntyre John and Mary Macaluso Peter and Carol Catalano Friends at Allegheny General Hospital, Pittsburgh, PA Robert E. Hebda Bethesda, MD Kingston, NY New Cahaan, CT Bethesda, MD John W. Fish and Ben and Ruth Armato Jay and Maria Hardenburg A memorial fund has been established in the name of Carol L. Dolcemascolo Jim and Ellen Myerberg Hartsdale, NY Portland, NY Mr. Don Francis Flowers Bethesda, MD Highland Beach, FL James & Janice Gragnano Donations have been made in Mr. Flowers’ memory by: Michael and Kelly Spector Pedelahore & Co., LLP Cheshire, CT Bethesda, MD New Orleans, LA Mrs. Francis Laufenberg, Orange, CA Sharron Cochran Helen Miazga and A memorial fund has been established in the name of Richard Ridge A memorial fund has been established in the name of Bethesda, MD Mr. Evan Cherkasky Alameda, CA Mr. Glen Edward Gardner Paul Moretti Donations have been made in Mr. Cherkasky’s memory by: Alexandria, VA Michel and Nicole Cholette Donations have been made in Mr. Gardner’s memory by: & Family Ted and Shirley Levy, Canandaigua, NY Eric and Lauren Lieberman Montreal, Quebec, Canada Sandra J. Mallory, Huntington Beach, CA Bethesda, MD John and Kathie Collins A memorial fund has been established in the name of A memorial fund has been established in the name of Sue Zarrett Bethesda, MD Gaithersburg, MD Dr. Paul Cherkasky Joe & Joan Loper & Family Mr. Ronnie Gilbert Ania, Susan, Kristina, Austin, TX Donations have been made in Dr. Cherkasky’s memory by: Donations have been made in Mr. Gilbert’s memory by: Dan and Mi Harlan New York, NY Hillary and Wayne Lee Stuart and Judy Kaplan, Pittsford, NY Wendy Kravat, Oceanside, NY & Family Robert and Janet Higgins Bethesda, MD Bethesda, MD A memorial fund has been established in the name of A memorial fund has been established in the name of Jay and Sandra Baraff Ms. Marilyn Cicero Ms. Zaihoun Go Karen Simons and Bethesda, MD Laura Goddard Donations have been made in Ms. Cicero’s memory by: Donations have been made in Ms. Go’s memory by: Silver Spring, MD Prendergast Pichard Family Chevy Chase, MD Ray and Lori Boelig, Londonderry, NH Joanne Austin, Eugene, OR

31 A memorial fund has been established in the name of A memorial fund has been established in the name of Robert and Nancy Foster Mrs. Robert Foster Ms. Laine L. Gold Mr. Andrew E. Helmich, Sr. Phoenix, AZ N. Tonawanda, NY Donations have been made in Ms. Gold’s memory by: Donations have been made in Mr. Helmich’s memory by: Robert and Sharon Miles Mr. and Mrs. Dennis Foster North Tonawanda, NY N. Tonawanda, NY Jane Corning, Lucille Leeb Elizabeth Pinnell, Williamsburg, VA Mollie Kane, Truckee, CA Doug Voorsanger Beachwood, OH A memorial fund has been established in the name of and Melba Corning Kathleen P. Fazio A memorial fund has been established in the name of San Mateo, CA Mr. Andre S. Idzikowski Gales Ferry, CT Ms. Shirley Spera Lane Tony and Heidi Noakes Donations have been made in Mr. Idzikowski’s memory by: Sally Weinberg Donations have been made in Ms. Lane’s memory by: Burbank, CA Cleveland, OH Martine Brageot Griffith Laboratories Howard and Ellen Dolce Troy Friedman and Elizabeth Well Gif Sur Yvette, France Canada, Toronto, Canada Helene Grossman Albuquerque, NM Dobbs Ferry, NY Roberta Schiffer Robert D. Mitchell Myong Parker Boca Raton, FL Sheera Margolies Teaneck, NJ Merle and Norma Arlen Allendale, NJ Ann Arbor, MI Michael and Scottsdale, AZ Ft. Lee, NJ Laura Bloom Joe Naylor Thomas and Barbara Hersman Phyllis Segal Teaneck, NJ Cuyahoga Falls, OH Annabel Berkman Lafayette, CA H.G. Piatkowski and Marvin Sorin Fair Lawn, NJ The Pagliei Family James & Barbara Doughty Kalamazoo, MI Brian Adelson Beachwood, OH Frank and Collette Grasso Wyckoff, NJ Solon, OH Brier, WA Ann Young Patricia A. Cigetich Teaneck, NJ The Margenau Family Dublin, OH Evelyn Schwartz Cleveland, OH Brooklyn, NY Grass Lake, MI Marie Kennedy A memorial fund has been established in the name of HomeSource Mr. and Mrs. P. Zagrodzki Ann Arbor, MI Myrna Arlen Bloch Real Estate, LLC Ms. Lois Imogene Lang Dearborn Hts., MI Shirley Brown Lyndhurst, OH Shaker Heights, OH Donations have been made in Ms. Lang’s memory by: Jeanne Idzikowski Ann Arbor, MI Bob and Karen Tucker Peter H. Greiner Ann Arbor, MI James and Christine Carr Bill and Nell Cole Jackie and Mary Leonard Shaker Heights, OH Shaker Heights, OH Andrew and Lake Bluff, IL Tanner, AL Tanner, AL Patricia Ferry Christine S. Hespen Kathryn Eisenberg Cecile M. Lemen Shaker Heights, OH and Susan C. Hespen Ann Arbor, MI Lakewood, CO A memorial fund has been established in the name of Betsy Beckwith South Euclid, OH Kathy Schmid Loretta M. Skewes Ms. Mary Langell Shaker Heights, OH Barbara Discenna Oneonta, NY Ann Arbor, MI Donations have been made in Ms. Langell’s memory by: Tiela–VLSP Chalmere Cleveland Heights, OH San Francisco, CA Gary E. Gumz Barbara Mendrygal, Austin, TX A memorial fund has been established in the name of Anne Brewer and William Miller Prairie Village, KS Shaker Heights, OH Mrs. Kathryn M. Karam A memorial fund has been established in the name of Suzanne Gold Donations have been made in Mrs. Karam’s memory by: Mr. Al LaTour Shaker Heights, OH Universal Positive Behavioral George A. Henry Donations have been made in Mr. LaTour’s memory by: Intervention and Support at Altmar, NY A memorial fund has been established in the name of Donald Erickson, St. Paul, MN Solvay Elementary School Scott and Renae Montroy Mr. Roger Goyne Solvay, NY Kirkville, NY A memorial fund has been established in the name of Donations have been made in Mr. Goyne’s memory by: Thomas and Virginia Reilly Mark and Wendy Osborne Mr. William Ledbetter Marcellus, NY Syracuse, NY Linda Laws, Coleman, TX Donations have been made in Mr. Ledbetter’s memory by: Stephen Grossman Linda Brown, Nancy Wood, A memorial fund has been established in the name of Dewitt, NY Lee Beals, Laurie Case Jessica Ledbetter Terra Barsanti Mr. Fred Green Carole Marascalchi and Carol Marshall Gardnerville, NV Davenport, CA Syracuse, NY Chittenango, NY Donations have been made in Mr. Green’s memory by: Ranee Barsanti Gary Selesner Douglas and Cynthia Foran Gardnerville, NV Las Vegas, NV Jerry and Renee Green, Boynton, FL Susanne Merchant Syracuse, NY Sandra Raffealli John and Sue Rauzy Cazenovia, NY OCM BOCES–CTC Staff Reno, NV Orangeville, CA A memorial fund has been established in the name of Karin Yerger Liverpool, NY Tim and Kathy Jeter John and Rose Ascuaga Mr. Norman Greer Clarence, NY Reno, NV Sparks, NV Donations have been made in Mr. Greer’s memory by: A memorial fund has been established in the name of Kurt W. Holobaugh Marv Peterson Great Mills, MD South Lake Tahoe, CA Renee Greer, Long Beach, NY Mr. Thomas Edward Kennell Shirley H. Barsanti Ced Sherrer Donations have been made in Mr. Kennell’s memory by: A memorial fund has been established in the name of Rio Dell, CA Bend, OR Ms. Janet N. Gunin The Grayslake Area Nancy E. Gross Herbert and Ouida Garms Frankie and Ron Alling Public Library Concord Twp, OH Sloughhouse, CA Zephyr Cove, NV Donations have been made in Ms. Gunin’s memory by: Grayslake, IL Arleen M. Dingeldein Bill and Kay Mosher David and Barbara Moffett Joan H. Gunin, Greensboro, NC Bensenville, IL Sloughhouse, CA South Lake Tahoe, CA Constance Alexander Rich and Teresa Guy A memorial fund has been established in the name of A memorial fund has been established in the name of Minden, NV Providence, UT Mr. Gene Hannon Mr. George Kooperman Jack and Maria Martin Peter Sprock Donations have been made in Mr. Hannon’s memory by: Donations have been made in Mr. Kooperman’s memory by: Gardnerville, NV Stateline, NV Franklin & Patricia Rahbeck Donald and Jennie Elgin Marsha K. Ross Geoffrey and Sandy Goldworm, Jupiter, FL Gardnerville, NV Muskogee, OK Muskogee, OK A memorial fund has been established in the name of A memorial fund has been established in the name of A memorial fund has been established in the name of Mrs. Susan M. Lachut Mr. George Lewis Mr. Martin Heiss Donations have been made in Mrs. Lachut’s memory by: Donations have been made in Mr. Lewis’ memory by: Donations have been made in Mr. Heiss’ memory by: Richard & Maryanne Lembo Kevin & Patricia Dickinson Harold and Sylvia Averell Bath Iron Works Rob and Ellen Busch, East Meadow, NY Liverpool, NY Lockport, NY Richmond, ME Bath, ME

32 A memorial fund has been established in the name of Wendell & Rosemarie Onley Gordon & Suzanne Pfeiffer Bonnie L. Therrien Tim and Diane Covello Ms. Kelly V. Lewis Wilmington, DE Wilmington, DE Wethersfield, CT West Hartford, CT Donations have been made in Ms. Lewis’ memory by: Ann Roser David and Martha Hipp Lewis and Patricia Furbush Jim and Marlene Casella Wilmington, DE Middletown, DE East Hartford, CT Burlington, MA Terri Holland, Mansfield, OH Jeffrey and Kathleen Hall William Early Norman and Jane Wroble William and Natalie O’Neill Avondale, PA Wilmington, DE Canton, CT East Hampton, CT A memorial fund has been established in the name of Bill and Jane Marino Douglas J. Pierce John and Barbara Meskill Mrs. Irena R. (Kuberska) Litzenberger Wilmington, DE Higganum, CT Kensington, CT Donations have been made in Mrs. Litzenberger’s memory by: William and Caryl Plunkett The Delray Summit Board Kenneth H. Stauffer, Macungie, PA A memorial fund has been established in the name of Tarrytown, NY of Governors Honorable Thomas J. Meskill Christine P. Plourde, Delray Beach, FL A memorial fund has been established in the name of Donations have been made in Judge Meskill’s memory by: New Britain, CT Lawrence and Ms. JoAnn Lopidus Barry I. Budlong Adrienne Davidson Marianne Fogarty Anthony R. Angelo Donations have been made in Ms. Lopidus’ memory by: Windsor, CT Delray Beach, FL Pelham Manor, NY Groton Long Point, CT Jeane K. Bendorf, Phoenix, AZ Eugene and Elaine Kagan Mary T. Peterson A memorial fund has been established in the name of Boca Raton, FL Berlin, CT Mr. Herbert H. Meyer A memorial fund has been established in the name of Betty W. Stroh Christine N. Hunihan Donations have been made in Mr. Meyer’s memory by: Ms. Patricia Daile Connors Lucks Suffield, CT Pawcatuck, CT St. Michael’s Men’s Club John and Pamela Flaherty Donations have been made in Ms. Lucks’ memory by: Timothy J. Gavronski Julius and Joy Bacci Chicago, IL Belvidere, IL Kensington, CT Avon, CT W. and R. Bain Steve and Sharon Ridgill Dennis and Jodi Tanrikulu Thomas R. Osborne Sr Culpepper, VA Asheboro, NC Irene Prigodich, Stephen Dr. and Mrs. Vincent Homer Glen, IL and Nancy R. Stumbaugh and Dorothy Prigodich, and Lillian Smith David and Rita Beata Chicago, IL A memorial fund has been established in the name of Lynn and Al Gavelek New Britain, CT Berlin, CT Western Springs, IL Mr. & Mrs. Henry H. Meyer Mr. Mike Lutzker Suzanne J. Alix Oak Lawn, IL Larry and Linda Gallupe Newington, CT John and Carol Guderyahn Donations have been made in Mr. Lutzker’s memory by: New Britain, CT Homer Glen, IL William O’Brien Valerie Walker Palos Park, IL Bernard Lessing, Huntington Station, NY Richard C. Luddy East Berlin, CT East Berlin, CT Kerry Colson A memorial fund has been established in the name of A memorial fund has been established in the name of Dennis and Donna Jolly Farmington, CT Mr. Michael Milito Mr. Paul Maynard Hebron, CT Anita Satriano Donations have been made in Mr. Milito’s memory by: Donations have been made in Mr. Maynard’s memory by: Conrad J. Kronholm, Jr. Mansfield Center, CT Old Lyme, CT Altria Employee Joseph and Carolyn Vitale Jennifer Krekorian Thomas & Dorothea Heston David and Ann Baroni Involvement Program Flushing, NY Wakefield, RI Cranston, RI William J. Butler Berlin, CT Princeton, NJ Savannah, GA Ray and Elaine Masse George & Mary Jane Mello Bob and Connie Michel A memorial fund has been established in the name of Bristol, RI Bristol, RI Grace O. Ingerson Newington, CT Anna M. Laffey Anne C. Gentile, Jane Kensington, CT Andrew L. Bab Mr. Edward K. Mitchell Pawtucket, RI Coakley, Martha Coakley, Kevin and Patricia Feeney New York, NY Donations have been made in Mr. Mitchell’s memory by: Glastonbury, CT Robert and Claire Chartier Mary Coakley-Welch Myron R. Bernstein Jim and Linda Roe Walt and Carol Howard Barrington, RI Ashland, MA Douglas and Ruth Porto Boca Raton, FL Gagetown, MI Owendale, MI Jean Donato James and Pierrette Farley Delray Beach, FL Carolyn Stauffer Jeri Kitchen Al and Charleyne Wallace Pawtucket, RI Bristol, RI Cynthia Salten Olathe, KS Cass City, MI Cass City, MI Joseph & Jacqueline Vanelli Boston, MA Thomas and Julia Parker Butch and Joan Weeks Joanne Bourdo Collegeville, PA Anthony and Erin Masciotra Niantic, CT Saginaw, MI Bad Axe, MI Albuquerque, NM Jon O. Newman A memorial fund has been established in the name of Gene and Sharon Rhode Hank & Kami Weitenbezner Larry & Adrienne Davidson West Hartford, CT Bay City, MI Bad Axe, MI Mr. Joe T. McCown Delray Beach, FL Priscilla Drake Anton and Marilyn Peters Richard Gettel Donations have been made in Mr. McCown’s memory by: David and Sharon Pulcini Delray Beach, FL Cass City, MI Caro, MI Jerry and Myra Millsapps, Rancho Viejo, TX Chicopee, MA Pauline C. Carlson Bob and Shirley Mc Intosh Larry & Joyce Kretzschmer Richard and Brookfield, CT Cass City, MI and Family A memorial fund has been established in the name of Mary Alicia Conway Barbara Heneghan Pigeon, MI Kensington, CT Old Saybrook, CT Mrs. Loretta Mae Mead A memorial fund has been established in the name of Donations have been made in Mrs. Mead’s memory by: Atty & Mrs. Chester Sledzik Bill and Mavis Davis New Britain, CT Avon, CT Ms. Mary Ann Hooks Monroe Trudy Hunkins Terry, Martha and Dr. & Mrs. Charles Jacobson Kevin and Janet Meeker Donations have been made in Ms. Monroe’s memory by: Watertown, NY Terisa Billings Manchester, CT Haddonfield, NJ Paul and Janet McGraw Beth Roseberry Tynan John and Portia Odell Canton, NY Judith L. Gaffney Patricia A. Capobianco Roswell, GA Atlanta, GA Goose Creek, SC Newington, CT Waterbury, CT Peter and Eileen Maren Zoe Albisu, Duluth, GA A memorial fund has been established in the name of Daniel J. Reed James D. O’Hara Gainesville, FL Carolyn Tryon, Marietta, GA Waterbury, CT East Falmouth, MA Ms. Lissa Schilling Mery Lauralee A. Morris Bruce Wise, Roswell, GA David and Ernest and Linda Ayala Alpharetta, GA Donations have been made in Ms. Mery’s memory by: Joe Huggins, Atlanta, GA Kimberly Januszewski Oakhurst, NJ Kimberlie Hall Fran Lee, Marietta, GA Dawn Taylor The Management of Greenwich, CT Esther R. Hannum Dunwoody, GA Hockessin, DE Advance Window & Siding Nancy Tyler Enfield, CT A memorial fund has been established in the name of and Kuhn’s Roofing Co. Nancy R. Sandberg Hartford, CT Mary Ann Wandrak Mr. William Morales Wilmington, DE Newark, DE Southington, CT Judge and Mrs. Donations have been made in Mr. Morales’ memory by: James and Ellyn LaPointe Phyllis S. Coney Joseph H. Goldberg Robert & Carmela Gilbertsen Middletown, DE Wilmington, DE Boynton Beach, FL Naples, FL Kathy Ladwig, Houston, TX

33 A memorial fund has been established in the name of Mary Gonzalez Jorge & Hazelina Santiago Kenneth and Rebecca Dr. Barbara Tomlinson Mrs. Lillian Morris Grafton, WI Wheeling, IL Cunningham Gibsonia, PA Avon Lake, OH Donations have been made in Mrs. Morris’ memory by: Jorge Garcia Randal & Julie Richardson Gretchen Totto Encino, CA Naperville, IL Jerry and Donna Smutney Natrona Heights, PA Timothy P. Morris, Naperville, IL Guaranteed Rate, Inc. ITS, Inc. South Windsor, CT Leighann Gacci A memorial fund has been established in the name of Chicago, IL Johnston, IA Carl and Maureen Ercol Cheswick, PA Davidsonville, MD Mr. David Moss Mark Wight Mike and Alberta Sherman Darien, IL Mary Ann D’Alessandro Jefferson Hills, PA Donations have been made in Mr. Moss’ memory by: Rachine, WI Justin Shady & Kathy Bryja A memorial fund has been established in the name of Virginia Moss Evanson, Silver Springs, MD Milwaukee, WI Robert and Susan Stocker Mr. Dale Rickerby Gregg Zak Naperville, IL A memorial fund has been established in the name of Milwaukee, WI Richard and Donations have been made in Mr. Rickerby’s memory by: Ms. Betty Munley Ron and Sue Shady Jeanette Czeszynski Tom and Susan Jones, Craig, CO Donations have been made in Ms. Munley’s memory by: Begium, WI Brookfield, WI Lisbeth A. Shady A memorial fund has been established in the name of Angelo and Rose Staikos, Hazlet, NJ Sandra Karas Park Ridge, IL Milwaukee, WI Ms. Zelaida Roa A memorial fund has been established in the name of NISH Classic Residence Donations have been made in Ms. Roa’s memory by: Des Plaines, IL Management, LP Mr. Tom Muno Chicago, IL Armando Cruz, Los Angeles, CA Paul and Jerilyn Zak Donations have been made in Mr. Muno’s memory by: George & Elizabeth Weiland Germantown, WI A memorial fund has been established in the name of Thomas Conklin and Family Richard & Carolyn Conklin Naperville, IL Dorothy J. Shady Mr. Neb Reunerfeldt Smithfield, VA Chincoteague Island, VA Oak Creek, WI Thilman Filippini Chicago, IL Donations have been made in Mr. Reunerfeldt’s memory by: A memorial fund has been established in the name of Charles and Cecile Lemen, Lakewood, CO A memorial fund has been established in the name of Ms. Karin Murray A memorial fund has been established in the name of Donations have been made in Ms. Murray’s memory by: Mrs. Arlene Rau Donations have been made in Mrs. Rau’s memory by: Mr. David A. Ryan James Stephan Cheryl Harper Donations have been made in Mr. Ryan’s memory by: San Diego, CA San Diego, CA Donald Rau, San Diego, CA Patrick and Kathleen Smid Gerald and Jane Posakony Friends @ the NCRA Department of the Air Force A memorial fund has been established in the name of Carlsbad, CA Rosslyn, VA Denver, CO Richland, WA Mr. Neb Rennerfeldt Stewart and Karol Roberts Donna Huss Richard & Edwina Duckels John and Carole Moats San Diego, CA San Marcos, CA Donations have been made in Mr. Rennerfeldt’s memory by: Centennial, CO Larkspur, CO Charles and Cecile Lemen Cecile Lemen A memorial fund has been established in the name of A memorial fund has been established in the name of Lakewood, CO Lakewood, CO Mr. Orlando Sanchez Mr. Joseph Nerone A memorial fund has been established in the name of Donations have been made in Mr. Sanchez’ memory by: Donations have been made in Mr. Nerone’s memory by: Mr. James Richardson Rick and Helen Dahlstrom Susan Ishikawa (Catalina) Christina Johnson, Hoboken, NJ Donations have been made in Mr. Richardson’s memory by: Arcadia, CA Montclair, CA Ed and Dianna Lindseth Salvatore & Mary Ann Taibi A memorial fund has been established in the name of Linda Payne Richard and Linda Tranquill Norco, CA Hayden, ID Brewerton, NY Avella, PA Mrs. Arlene O’Donnell Sue Sonnenberg George and Arlene Trumble Mariko Sando and Melvin and Dolores Valduga Donations have been made in Mrs. O’Donnell’s memory by: Irvine, CA Walton, KY Jack Sclabassi Avella, PA Susan, Don, Mandy Gordon Ken and Diana Tarbutton James J. O’Donnell, III, Ocean City, NJ Pittsburgh, PA Donald Valduga San Juan Capistrano, CA San Juan Capistrano, CA Howard and Peg Alex Avella, PA Robert and Lucy Anderson Robert & Linda San Miguel A memorial fund has been established in the name of Pittsburgh, PA Emily Tommasi Stuart, FL Corona del Mar, CA Ms. Margaret O’Keefe Edward M. Chekan Avella, PA Annette Rasse Happy Hoofers Riding Club Donations have been made in Ms. O’Keefe’s memory by: Pittsburgh, PA Alan and Florence Gould Lancaster, CA Eustis, FL Oretta Cecchini-Muro Burgettstown, PA Morgan Keegan & Company, Inc., Memphis, TN Kathleen McCloskey Rod and Pat Anderson Avella, PA Mary Taylor & Family Trinity, FL Middleton, WI John E. Merritt Bethel Park, PA A memorial fund has been established in the name of Carolyn Sanchez Tillie Hogan Pittsburgh, PA Robert and Rita Havran Garden City, NY Riverside, CA Mr. Derrill Pierce Theodore Vuchinich III Pittsburgh, PA William Worobe Kathleen Campion Donations have been made in Mr. Pierce’s memory by: and Virginia Balderston Andrew Aloe Oceanside, CA San Juan Capistrano, CA Gibsonia, PA Pittsburgh, PA Rolf and Nancy Glerum, Portland, OR Larry Mott Ken and Debbie Williams Gary and Chris Gallis Dorothy Taczak Gibsonia, PA Concord, CA Laguna Woods, CA A memorial fund has been established in the name of Avella, PA Martin and Marilyn Dedrick Robert and Patrice Finley Pete and Pam De Ivernois Peter Riba Mr. Robert James Pokora Dana Point, CA Eustis, FL Gibsonia, PA Wexford, PA Donations have been made in Mr. Pokora’s memory by: Gary Shindler Paul Redish Dottie Fleck Dr. and Mrs. Clark Leslie San Juan Capistrano, CA Marietta, GA Senior Lifestyle Corporation Jill Randall and Jodie DeTullio New Concord, OH Al and Gloria Ravera Chicago, IL Kildeer, IL Export, PA Skirpan and San Juan Capistrano, CA Shared Imaging, Inc. Marla Campbell John and Melinda Latynski Goehring Families Streamwood, IL Milwaukee, WI Avella, PA Wexford, PA A memorial fund has been established in the name of Joel and Pam Polakow Larry and Kris Regas Tim and Cindy Pasko Jeanette M. Lewis Mr. Carl Siddall Mundelein, IL Naperville, FL Elizabeth, PA Bethel Park, PA Donations have been made in Mr. Siddall’s memory by: Tom and Denise Gornick Robert Foss Geraldine Luchok Julia Kubacka Mundelein, IL McHenry, IL Bethel, PA Avella, PA EMR, INC., Lawrence, KS

34 A memorial fund has been established in the name of John and Matilda Randazzo Maria Hunez-Perez David and Lynne Toth The Toth & Koutis Families Mr. Agustin Sierra Brooklyn, NY Woodside, NY Westport, MA Manalapan, NJ Donations have been made in Mr. Sierra’s memory by: Pina Dagnino and Family Andrew and Carol Alesi Jim and Liz Coffin Michael and Brooklyn, NY Massapequa, NY Arlington, VA Yvonne D’Agostino Margaret Cain, Alexandria, VA Mike and Barbara Devine Richard & Bertha Zalewski Bryan H. Davidson Englishtown, NJ A memorial fund has been established in the name of Rockville Centre, NY Nesconset, NY Arlington, VA Alan and Frances Toth Carteret, NJ Mr. James H. Sims J. Kenneth and Shelia Meyd A memorial fund has been established in the name of Dunn Loring, VA David, Donna, Davy Bunton Donations have been made in Mr. Sims’ memory by: Mr. Robert L. Syre Patricia Littlepage Arlington, VA John C. Bird, Birmingham, AL Donations have been made in Mr. Syre’s memory by: Alexandria, VA Joseph Toth Austin and Johanna Kingston Manalapan, NJ A memorial fund has been established in the name of Wards Cove Packing Co. Timothy and Susan Stromer Freehold, NJ Donna, Dave, Davy Bunton Seattle, WA Bellingham, WA Mr. Art Smith Louis & Elizabeth Baumgaertner Arlington, VA Melvin and Pat Stromer Donations have been made in Mr. Smith’s memory by: Colts Neck, NJ Joe Toth Bellingham, WA Gerry Kroll, Agoura, CA Stacey, Brady & Manalapan, NJ A memorial fund has been established in the name of Gabrial Milak-Youngman A memorial fund has been established in the name of Flemington, NJ Mr. John P. Tedesco Mr. Jay R. Southcombe Donations have been made in Mr. Tedesco’s memory by: A memorial fund has been established in the name of Donations have been made in Mr. Southcombe’s memory by: Anthony Tedesco, Middlesex, NJ Mr. Richard Valicenti Mary James Joseph & Elizabeth Schuch Donations have been made in Mr. Valicenti’s memory by: Milford, OH Batavia, OH A memorial fund has been established in the name of Victoria V. Michelmore, Port Jefferson, NY A memorial fund has been established in the name of Mr. Donald Earl Thomas Ms. Pam Speth Donations have been made in Mr. Thomas’ memory by: A memorial fund has been established in the name of Donations have been made in Ms. Speth’s memory by: Lynn Martini Frederick and Mr. Erich P. Valstyn Marroni, Inc., South Bend, Indiana Midland, MI Ardythe Grosskopf Donations have been made in Mr. Valstyn’s memory by: Donald Thomas La Grange, IL Carol Fischer Valstyn, Gig Harbor, WA A memorial fund has been established in the name of Palatine, IL Lucy A. Drews Fenton, MO Ms. Claudia Elaine Stanton Craig and Karen James A memorial fund has been established in the name of Algonquin, IL Alice, Kelly, Marja, Donations have been made in Ms. Stanton’s memory by: Mr. Clifford D. Victorine Ruth Sellers Linda & N. Reid Shirley Cresap Short Cressman & Hoffman Estates, IL Elk Grove Village, IL Donations have been made in Mr. Victorine’s memory by: Saint Joseph, MO Burgess PLLC, Seattle, WA Daniel David Vivian Schings Noreen Victorine, Lakewood, WA Dallas, TX Dixon, IL A memorial fund has been established in the name of Marty and Claudia Kux Roberta M. Thomas A memorial fund has been established in the name of Ms. Betty Jean Stevenson Seeley Lake, MT Grayslake, IL Ms. Eunice Wagneer Donations have been made in Ms. Stevenson’s memory by: Donations have been made in Ms. Wagneer’s memory by: Jim and Louise Lopeman Dorothy Mittelstaedt A memorial fund has been established in the name of Nuchael and Mary Kay Keenan, Fairfax Station, VA Hercules, CA Bloomington, IL Mr. John D. Tillman Edward J. Barulich Mark Stevenson Donations have been made in Mr. Tillman’s memory by: Rodeo, CA Benecial, CA A memorial fund has been established in the name of Don and Carolyn Herndon, Greenville, AL Mr. Karl Wagner A memorial fund has been established in the name of Donations have been made in Mr. Wagner’s memory by: Ms. Doris Stewart A memorial fund has been established in the name of Elisabeth Demarest, Hillsdale, NJ Donations have been made in Ms. Stewart’s memory by: Ms. Caprice Titone Donations have been made in Ms. Titone’s memory by: Joan Scott, Irving, TX A memorial fund has been established in the name of Arthur and Susan Garyn Jeffrey and Jo Ann Chaus Ms. Peggy Wanner A memorial fund has been established in the name of Upper Saddle River, NJ Upper Saddle River, NJ Donations have been made in Ms. Wanner’s memory by: Mr. Rocky Sullivan Sandy, Greg and Ayan Kriser USR Girl Scout Troop 880 Donations have been made in Mr. Sullivan’s memory by: Upper Saddle River, NJ Upper Saddle River, NJ Mary Ellen Huetsch, Waterloo, IL Ken and Dayne Colameo Norman and Alison Axelrod Robert Mahaffey Sally DeHart Upper Saddle River, NJ Upper Saddle River, NJ A memorial fund has been established in the name of San Rafael, CA San Francisco, CA Mario and Judith Gianetti Muffin Mania Mr. Gordon Wascher San Rafael, CA San Rafael, CA A memorial fund has been established in the name of Donations have been made in Mr. Wascher’s memory by: Bernard Giorgi Bruce and Sue Scott Mrs. Jeanette Toth Bonnie K. Wascher, St. James City, FL Corte Madera, CA San Rafael, CA Donations have been made in Mrs. Toth’s memory by: Mitchell and Vanessa Battista James Hosmer Carl, Luann and Mark Kogel A memorial fund has been established in the name of Rebecca DeShields New York, NY McLean, VA Jackson, NJ Mrs. Jennifer Sharon Gallagher-Welch San Rafael, CA Winifred Del Grorra Alma & Barbara Baumgaertner Catherine M. O’Reilly Donations have been made in Mrs. Welch’s memory by: Kentfieldl, CA Colts Neck, NJ Point Pleasant, NJ Sara Edith Gallagher, Dayton, OH A memorial fund has been established in the name of Nate Plevinsky Vera Rosenberg Cherry Hill, NJ Morganville, NJ Ms. Madeline Sutera A memorial fund has been established in the name of Nixon & Vanderhye P.C. David and Donna Bunton Mr. Don Ziegler Donations have been made in Ms. Sutera’s memory by: Arlington, VA Arlington, VA Donations have been made in Mr. Ziegler’s memory by: Joseph and Susan Castagna Jean M. Buscemi Joseph and Mildred Reid Dennis and Toni Winans Smithtown, NY Ridgewood, NY Jackson, NJ Haymarket, VA George and Carol Pintelon, Cologne, MN

35 MDS Foundation Information

The Foundation’s Board of Directors If you would like additional information, please contact us at: John M. Bennett, MD Kathy Heptinstall, BSN, RN The MDS Foundation Professor of Medicine, Emeritus Operating Director 36 Front Street, P.O. Box 353 Laboratory Medicine and Pathology The MDS Foundation, Inc. Crosswicks, NJ 08515 University of Rochester Medical Center Alan F. List, MD Rochester, New York, U.S.A Phone: 800-MDS-0839, Fax: 609-298-0590 Professor of Medicine Outside the US only: 609-298-1035 David T. Bowen, MD University of South Florida Consultant Haematologist Chief, Hematologic About the Foundation The Leeds Teaching Hospitals Malignancies Division Leeds General Infirmary H. Lee Moffitt Cancer Center The Myelodysplastic Syndromes Foun- Leeds, United Kingdom and Research Institute dation was established by an international Tampa, Florida, U.S.A. group of physicians and researchers to Mario Cazzola, MD provide an ongoing exchange of information Professor of Hematology Ghulam J. Mufti, MD relating to MDS. University of Pavia, School of Medicine Professor of Haemato-Oncology Until the Foundation was set up, no formal Head, Department of Hematology University of London working group had been devoted to MDS. IRCCS Policlinico S. Matteo King’s College Hospital During the past decade we have conducted Pavia, Italy London, United Kingdom nine international symposia—in Austria, England, the United States, Spain, Czech Theo J.M. de Witte, MD, PhD Charlotte M. Niemeyer, MD Republic, Sweden, France, Japan, and Italy. Professor of Hematology Professor of Pediatrics The Tenth International Symposium is being University Medical Center University Children’s Hospital held May 6–10, 2009 in Patras, Greece. Nijmegen St. Radboud Freiburg, Germany Nijmegen, The Netherlands A major Foundation effort is our Stephen D. Nimer, MD international information network. This Elihu Estey, MD Head, Division of Hematologic Oncology network provides patients with referrals to Professor, Division of Hematology Memorial Sloan-Kettering Cancer Center our Centers of Excellence, entry into University of Washington Medical Center New York, New York, U.S.A. available clinical trials, sharing of new Member Fred Hutchinson research and treatment options between Cancer Research Center Robert J. Weinberg, Esq. physicians and researchers, and extension Seattle Cancer Care Alliance Pepper Hamilton LLP of educational and emotional support to Seattle, Washington, U.S.A. Philadelphia, Pennsylvania, U.S.A. physicians, nurses, patients, caregivers, and Pierre Fenaux, MD Emeritus Member others working with MDS patients. Professor of Hematology Franz Schmalzl, MD In response to the needs expressed by Hôpital Avicenne, University Paris 13 Innsbruck, Austria patients, families, and physicians, we have Bobigny, France established Patient Advocacy Groups, research funding, and physician education. Peter L. Greenberg, MD Membership The MDS Foundation is a publicly supported Professor of Medicine/Hematology Information organization, exempt from federal income Stanford University School of Medicine tax under section 501(C)(3) of the IRS code. Stanford, California, U.S.A. The MDS Foundation would like to have you as a member. Membership is US$40 a Terry Hamblin, DM, FRCP, FRC Path year for physicians and other professionals. Our Website Professor of Immunohaematology Patients, their families, and others interested The MDS Foundation webpage is for Southampton University in MDS may join at the reduced rate of $25. healthcare professionals, patients, and other Bournemouth, United Kingdom Membership benefits include quarterly interested people. The Professional Forum Eva Hellström-Lindberg, MD, PhD issues of the MDS News, a special and the Patient Forum are integral parts of Associate Professor of Hematology subscription rate of $119.00 for Leukemia our website. Karolinska Institutet Research (a substantial discount from the The website is constantly being updated to Institution for Medicine current institutional subscription rate of better serve the needs of our patients, their Huddinge University Hospital $2,373), and the worldwide Centers of families, and the physicians who treat them. Stockholm, Sweden Excellence patient referral service. Please visit us at www.mds-foundation.org.

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