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FALL 12 News.Qxd Volume 23, Issue 2 FALL/WINTER 2017 newsletter of the myelodysplastic syndromes foundation MDS NEWS HIGHLIGHTS FROM THE GUEST EDITOR’S DESK I The 14th International Symposium on Myelodysplastic Syndromes: An Overview Presented by Symposium Chair: Guillermo F. Sanz, MD, PhD May 3–6, 2017 • Valencia, Spain BREAKF AST SYMPOSIUM Individualizing Therapeutic Strategies for Patients with MDS PLAN TO ATTEND ASH 2017 MDS FOUNDATION BREAKFAST SYMPOSIUM December 8, 2017 • Atlanta, Georgia December 8, 2017 PRESENTATIONS WILL BE AVAILABLE on the 7:0 0– 11:00 am Atlanta, Georgia MDS Foundation website www.mds-foundation.org IN THIS ISSUE TABLE OF CONTENTS FROM THE GUEST EDITOR’S DESK 2 PATIENTS AND CAREGIVERS LIVING WITH MDS FORUMS PROFESSIONAL SYMPOSIA 31 MDSF MEMBERSHIP 14th International Symposium on MDS 4 32 PATIENT SUMMARY: IN THE NEWS 36 14TH INTERNATIONAL SYMPOSIUM ON MDS 6 AML CORNER 37 MEETING HIGHLIGHTS & ANNOUNCEMENTS OUR CAREGIVER STORIES 40 ASH 2018: MDS Breakfast Symposium 24 OUR PATIENT STORIES RESEARCH 46 CONTRIBUTIONS TO THE FOUNDATION International Working Group for 25 Prognosis in MDS Gifts 51 MDS/MPN International Working Group 26 Memorial Donations 52 MDS RESOURCES: Living Endowments 52 LITERATURE HIGHLIGHTS 27 15TH INTERNATIONAL SYMPOSIUM MDS CENTERS OF EXCELLENCE 30 ON MDS 56 www.mds-foundation.org FROM THE GUEST EDITO R’ S DESK GUESTX XEXDXITX ORIAL Guest Editorial – The 14th International Symposium on Myelodysplastic Syndromes: An Overview The 14th Symposium came back to the The scientific contents of original format of previous symposia with the different sessions only one track running almost at all times. This ‘old’ format gave the delegates fully covered both the the opportunity to attend all relevant sessions, without losing any details of the numerous established relevant advances occurring in the as well as the new biological knowledge of MDS, and in the current and future management of those Guillermo F. Sanz, MD, PhD breakthroughs in the patients. On May 3rd, and before the Head, Clinical Hematology Opening Ceremony, there were 3 very well & Hematopoietic Cell field of MDS, and allied attended workshops on Flow Cytometry, Transplantation Unit Genetics, and Cytomorphology where both Hospital Universitario y hematological disorders. Politécnico La Fe specialists in training and experienced Valencia, Spain physicians and biologists were able to freely interact with the most recognized Valencia, Spain: place for this meeting. The building, international experts in those fields which From May 3–6, 2017, the MDS designed by Sir Norman Foster (also the is so essential for an accurate diagnosis Foundation and I, along with the members architect of the new and magnificent Apple and up-to-date management of MDS. At of the Scientific Subcommittee and the Park in Cupertino, CA), seemed to be the Opening Ceremony, Dr. Nimer and I Local Organizing Committee of the specifically built for covering the needs of welcomed all attendees to the meeting and Spanish Group on MDS (Grupo Español our Symposium. The light and warm we had the pleasure of listening to the de Síndromes Mielodisplásicos, GESMD), environment, the latest up-to-date audio- magisterial lecture on “Clonal diversity welcomed 1,074 delegates coming from visual technology, and the different and clonal evolution in MDS progression” 65 countries to Valencia, Spain for the polyvalent rooms and spaces of the by Dr. Timothy Graubert, where he 14th International Symposium on Congress Center had a lot to do with the dissected the diverse genomic lesions that Myelodysplastic Syndromes. joyful, friendly, and interactive networking drive the appearance and progression of As Dr. Stephen Nimer, Chairman of experienced by all delegates. Furthermore, MDS. This was followed by the Welcome the MDS Foundation, stressed at the the members of the symposium secretariat Reception that gave all of us the Networking Event on the evening of May (KENES), the local organization opportunity to enjoy the marvelous sound 5th, the meeting was a huge success and set (PALCONGRESS), and GESMD members of the Orquesta Filarmónica Martín i a new standard for our upcoming bi-annual did their best to succeed in easing and Soler de Valencia and Orquesta Unión symposia. “This is the best MDS solving all the issues that really mattered at Musical Santa Cecilia de Onda, conducted Foundation symposium we have ever had,” the event. The availability of several quite by Mrs. Carmen Más Arocas. The said Dr. Nimer. The scientific contents of comfortable and well equipped hotels audience shared the magic of those non- the different sessions fully covered both the located within walking distance from the professional but exquisite musicians that numerous established as well as the new Congress Center was also an added value for breakthroughs in the field of MDS and attendees. And finally, the spring weather amused us for more than one hour with a allied hematological disorders. Session in Valencia was so splendid during the full repertoire of very-well known and Chairs and invited speakers delivered conference that it allowed all the different admired songs coming from classic sound, real and unbiased, scientific MDS stakeholders, including physicians, Spanish and other European country knowledge in the MDS arena, and all researchers, pharmacists, pharmaceutical composers. After that remarkable participants enjoyed an enthusiastic and company representatives, patient advocacy performance, attendees were able to positive atmosphere. The venue, the groups, and patients attending the Patient delight in some of the excellent typical Valencia Congress Palace (Palacio de Forum meeting, to explore the diverse dishes Valencia offers to those having the Congresos de Valencia), was the perfect treasures that the city of Valencia holds. luck of visiting our city. 2 GUEST EDITORIAL Other novelties of this 14th MDSF investigators, working in the field, the official program that were very well meeting were the 4 early morning Meet-the chance to present their research. received. There were two Satellite Expert sessions where recognized experts Accordingly, the 14th MDSF meeting Symposia, sponsored by the pharmaceutical in different areas of MDS diagnosis and allocated sufficient time slots to feature 4 companies Celgene and Novartis, management, offered their expertise and Oral Sessions, each with 6 oral abstracts, respectively, and a Pipeline Session on advice on particular clinical cases. another 2 oral abstracts at every Plenary MDS & Myeloid Malignancies, where six The 7 Plenary Sessions of the meeting Session (overall, 16 abstracts) and the top representatives from different pharma- fully covered all the relevant aspects outstanding Tito Bastianello Young ceutical companies presented first-hand to regarding MDS, including Biology and Investigator Session, with the 4 best the audience their drug development in the Pathogenesis (2 sessions), Diagnosis and abstracts coming from less than 35 year-old field. That session was a big success, and Prognosis, Chronic Myelomonocytic researchers and clinicians. All these oral, as we suggest this should be maintained in Leukemia – a borderline MDS disorder, well as the best quality abstracts selected future MDSF meetings. Singular MDS Subtypes, such as 5q- for poster presentations, were chosen Finally, the Gala Networking Event, syndrome and MDS in children, and among the more than 380 submitted that was beautifully prepared by the Treatment (3 sessions), including current abstracts by a panel of more than 40 LOC, took place at the Oceanographic options, new therapies and allogeneic experts in the different areas of MDS Marine Park, one of the most beautiful hematopoietic cell transplantation. Further, research. I would like to thank all of the aquariums in Europe. The delegates had the 4 additional parallel sessions dealt reviewers for their impressive commitment the opportunity to explore that amazing with Health Economics and Research to that invaluable task. animal habitat at their leisure, as well as Outcomes, Predicting Response to Apart from the physicians main viewing a wonderful dolphin show, Therapy, Controversial Issues, and Caring program, there were also three relevant followed by a delicious dinner in the best for the Patient with MDS, all of them sessions. The MDS Patient Forum, environment possible. underlying the pivotal and central role of devoted to MDS patients and their In conclusion, the Valencia MDS MDS patients in our research and daily caregivers, provided an excellent forum for Foundation Symposium was a big success, practice. All those sessions were featured vivid discussions and interactions with not only from a scientific point of view, but by outstanding speakers who provided MDS physicians, and was a great success. for the unforgettable friendly atmosphere updated data, sometimes unpublished, of Further, for the first time, the symposium that allowed close, positive, and enthusiastic great valor for all delegates. It is almost hosted a Pharmacists Session that recognized interaction between all delegates. In the impossible to highlight one lecture over the relevance of these professionals in end, MDS is like a great family and we did the rest. True, the increasing impact on the appropriate management of MDS our best for everyone attending the meeting clinical practice of the massive patients. to feel at home — a really difficult task developments on genetics and cell biology The Valencia MDS Foundation meeting when you are abroad. We believe that
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