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fall 2009: volume 15, issue 2 newsletter of the myelodysplastic syndromes foundation From the Guest Editor’s Desk 10th Int’l Symposium on Myelodysplastic Syndromes there were 36 selected oral communications, and by adding the six presentations of the young investigator’s plenary session, a total number of 42 oral presentations were given, which is higher than the respective number of the previous symposia. There were 139 poster presentations, divided into two sessions, and 181 submitted abstracts for Contents Argiris S. Symeonidis, MD presentation. The symposium venue was and Nicholas C. Zoumbos, MD Drug News 10 nice, with continuous availability of coffee, University of Patras Medical School refreshments, and snacks. The fine weather Young Investigator Grant Program 11 Hematology Division also permitted many participants the Meeting Highlights/Announcements 12 Patras, Greece opportunity to visit the famous ancient ruins of Delphi and Olympia, which stand at a Current Discussions in MDS 15 Patras, Greece: May 6–9, 2009 distance of about 100 kilometers from Patras. Foundation Initiatives 18 The city of Patras, the third largest city in The Opening Ceremony was bright and Greece and the Cultural and Convention consisted of music and folk dancing, the Patient Services 19 Center of its university, had the honor of Suzanne Fleischman Memorial Lecture and Patient Forums and Support Groups 20 hosting the 10th International Symposium a lecture on Greek medical history. The on Myelodysplastic Syndromes, May 6–9, musical part of the ceremony combined the Patient Advocacy 23 2009. In this symposium, all new information traditional Greek music and the folk dancing Patients Share Their Stories 25 on the classification, pathogenesis, prognostic by the employees and students of the factors, and on the latest treatment University of Patras Dance Club, with the Patient Tributes 29 approaches for MDS were discussed. The modern adaptation of Manos Hatzidakis’ Nutritional Health 32 symposium was attended by approximately “Reflections,” performed by the Greek Rock 1200 participants originating from 55 Band “Raining Pleasure.” The Suzanne MDS Centers of Excellence 37 countries all over the world, a really Fleischman Memorial Lecture was given by Information on Clinical Trials 40 satisfactory figure in view of the emerging David Cella, Professor of Psychiatry and news updates on the flu pandemic the first Behavioral Sciences at Northwestern Educational Resources 43 days of May. The symposium was chaired by University Feinberg School of Medicine, Foundation Publications 47 Professor Nicholas Zoumbos, Head of the Evanston, Illinois, and was entitled Department of Internal Medicine and “Symptom and treatment burden: Effect on Contributions to the Foundation 48 Hematology at the University of Patras, and the quality of life.” Finally, the archeologist In Memoriam 49 whose main interest and involvement is the Professor Michael Petropoulos gave a very area of bone marrow failure syndromes and interesting lecture, presenting the Asclepius General Information 56 MDS in particular. Temples of Peloponnese and analyzed their MDS Practice and Treatment Survey 57 During the two and a half active days of significance as medical, social, and spiritual the symposium, 42 invited lectures were centers of the ancient times. The opening presented in 11 plenary sessions by ceremony ended with a reception in the distinguished expert speakers. Moreover, foyer of the Convention Center. 1 There were also some important participants. It became clear that even now, pathogenesis of MDS. Dr. G. Mufti reviewed novelties presented at this symposium. in the era of the very sophisticated the existing experience, supporting that all First, the Young Investigator Plenary Session diagnostic methods, morphology remains types of MDS share a more or less was introduced, in which the six better the cornerstone for diagnosis and prognosis prominent underlying immunopathogenetic original research abstracts, presented by of MDS. component. Dr. S. Nakao focused his investigators younger or equal to 35 years lecture on the role of the immune system in old, were presented. Indeed, there were six It became clear that even the pathogenesis of low-risk MDS. He very interesting presentations, all of which reported that about 20% of the patients were equally awarded. Second, a “Challenge now, in the era of the very with RA and RCMD, particularly those the Expert” session, chaired by Moshe sophisticated diagnostic with profound thrombocytopenia and low Mittelman and Constantinos Tsatalas, was bone marrow megakaryocyte count, bear organized for the first time. In this session, methods, morphology remains PNH+ cells. These patients should be four interesting case studies were the cornerstone for diagnosis distinguished and should not be treated with presented, with unique clinical features and and prognosis of MDS. chemotherapy or with hypomethylating courses, which flared up lively discussion agents but with immunosuppression, using with the audience. Third, for both poster ATG+cyclosporine-A. In support of the sessions there was a poster walk, chaired The Nursing Educational Program on above-mentioned data are the data from a by a symposium committee, which MDS, which was initially introduced at the Greek group from Athens (A. Efthimiou et al.), encouraged discussion on the presented 9th International Symposium on MDS in who found PNH+ cells in 11 out of 71 material and improved communication Florence, was successfully organized for patients with MDS. between presenters and other participants. the second time by the MDS Foundation Dr. Epling-Burnette et al. investigated the The poster committees evaluated all Nursing Advisory Board (see page 12).The relationship between treatment with ATG, posters and awarded the best poster of Nursing Program was arranged this time in peripheral blood lymphocyte subpopulations each area of interest of MDS. Finally, a parallel with the rest of the scientific and homeostatic T-cell proliferation. They Patient and Family Forum was organized for program of the symposium and was held in found that effector memory cells comprise the first time. This was a three hour two sessions, split into two consecutive the dominant T-cell population and CD8+ informative session, adapted for patients afternoons. The Nursing Program was T-lymphocytes predominate, with a high rate and non-health professionals in general, in organized and directed by Kathy Heptinstall, of homeostatic turnover. These cells are which the natural course, clinical features, and the availability of a concurrent directed by specific cytokines implicated in newer treatment modalities, follow-up translation into Greek gave the enthusiastic the pathogenesis of MDS and can be used in recommendations and guidelines, as well as group of 30–35 nurses the opportunity to the monitoring of response to various issues of psychological support and of attend the event. It appears that the Nursing immunomodulatory treatments. quality-of-life were analyzed. This forum was Program is going to be a standard part of Clonal expansion in MDS is at least in attended by approximately 70 patients and the educational program of every MDS part influenced by the interaction of the their relatives and/or caregivers, and was international symposium in the future. effector cells of the immune system and the particularly successful, in view of all the Following is a review of some of the dysplastic hematopoietic cells. Dr. A. Kondo questions which were addressed. In fact most important information which was et al. from Tokyo presented data showing some patients, unable to attend for various presented during the 10th International that B7-H1 co-stimulatory molecules, reasons, have asked to reorganize such an Symposium on MDS. expressed on blast cells of patients with informative patient-addressed forum. MDS, interact with their receptors (PD-1 The “Tito Bastianello Award,” which Approaching Immune molecules) on T-cells and induce T-cell launched in Florence in 2007 to support Pathogenesis and Other apoptosis. Blocking the B7-H1#PD-1 co- MDS research in memory of the Pathogenetic Aspects of MDS inhibitory pathway in co-culture experiments homonymous person who died of MDS, was The role of the immune system in the of MDS cell lines and normal T-lymphocytes given to all the presenters of the Young pathogenesis of MDS is evolving. Substantial resulted in increased T-cell proliferation Investigator’s Plenary Session. information on this issue was discussed and decreased apoptosis. Therefore, the Particularly interesting and once more during the 10th International Symposium of aberrant expression of B7-H1 molecules on very successful was the Morphology MDS. The first roundtable of invited MDS progenitors might represent a Workshop, chaired by John Bennett and speakers and many oral and poster mechanism of escape of immune surveillance Jean Goasguen and attended by about 150 presentations were dedicated to the immune and of clonal expansion. 2 These effector T-cells are mainly or exclusively distributed in the bone marrow and may not be found in the peripheral blood. Dr. F. Alfinito et al. from Naples showed that in the bone marrow of patients with low/intermediate-1 risk MDS adaptive immune effector cells and CD4+CD25high Foxp3+ cells (T-reg) are clustered and can be found in association with CD54+CD8+ T-lymphocytes. In this study, the proportion of marrow T-regs paralleled the IPSS score, and therefore this proportion could represent another