fall/winter 2013: volume 19, issue 2
newsletter of the myelodysplastic syndromes foundation MDS NEWS HIGHLIGHTS
FROM THE GUEST EDITOR’S DESK I 12th International Symposium on MDS: An Overview Presented by Prof. Dr. med. Wolf-Karsten Hofmann and Prof. Dr. med. Arnold Ganser
FEATURING MDS CLINICAL TOOLBOX
ASH 2013 MDS FOUNDATION BREAKFAST SYMPOSIUM December 6, 2013 • New Orleans, Louisiana I PLAN TO ATTEND!
TABLE OF CONTENTS TABLE OF CONTENTS
FROM THE GUEST EDITOR’S DESK 2 MDS Resources: Literature Highlights 18 12th International MDS Symposium 4 Patient Initiatives Revised International Prognostic Scoring System for MDS 5 Patient and Caregivers LIVING with MDS Forums 20 The MDS Forum – Berlin, Germany 6 MDS Patient Support Groups 21 About The Foundation 9 Patient and Family Contributions 23 Meeting Highlights/Announcements ASH 2013 MDS FOUNDATION Fundraising for MDS Foundation 29 BREAKFAST SYMPOSIUM 10 Nursing in MDS 30 International MDS Symposia 11 Information on Clinical Trials 31 From The Foundation MDS Centers of Excellence 32 Building Blocks of Hope 13 Contributions to the Foundation MDS CLINICAL TOOLBOX 14 Thank You 38 MDS Awareness 15 Memorial Donations 39 In Memory of Robert Weinberg 16 MDS Foundation Information 40 www.mds-foundation.org FROM THE GUEST EDITOR’S DESK
INTERNATIONAL SYMPOSIUM ON MYELODYSPLASTIC SYNDROMES
12th International Symposium on MDS: An Overview As a novelty to this meeting, the plenary sessions not only consisted of classical well as discussions on challenging cases plenary talks but also one oral presentation from the daily practice of the attending on original data submitted to the congress doctors. The infectious enthusiasm of the thereby providing a prominent platform to faculty, namely Teresa Vallespi (Spain), young investigators and researchers. While Gina Zini (Italy), Torsten Haferlach two years ago in Edinburgh participants of (Germany), Marius MacKenzie (The the congress were excited by the brand new Netherlands), Masao Tomonaga (Japan), data on spliceosome mutations in MDS, the Richard Brunning (United States), Jean second day in Berlin started with a plenary Goasguen (France), Ulrich Germing session dedicated to summarize the data (Germany), and John Bennett (United and knowledge on molecular findings Wolf-Karsten Hofmann, MD States) and the vital participation of the acquired so far and their implication in Florian Nolte, MD attendees made this a perfect start for the clinical decision making. Timothy Graubert University Hospital Mannheim, entire meeting. (United States), Seishi Ogawa (Japan), Joop Germany The opening ceremony was very much Jansen (The Netherlands), and Benjamin Arnold Ganser, MD under the impression of the decease of two Ebert (United States) elaborated on the Felicitas Thol, MD MDS patients: In a very affectionate but “OMEs” in MDS, meaning: the genome, Hannover Medical School, Germany also humorous way Stephen Nimer (United the spliceosome, the epigenome and the For the first time the International States) recalled the person, the work, and impact of “OME alterations” on MDS Symposium on Myelodysplastic Syndromes the impact of Bob Weinberg (†Apr 27th classification, which provided a felicitous was held in Germany. In the city of Berlin 2013) on the MDS community, while Wolf- introduction for Elli Papaemmanuil’s approximately 1300 attendees from 67 Karsten Hofmann recited the optimistic (United Kingdom) presentation of original countries joined this 12th International and enjoyable speech of one of his long data on clinical implications of gene Symposium on MDS. As a novelty the lasting patients who was supposed to hold mutations in MDS. meeting was chaired not by one but two an address entitled “Diagnosis of MDS: The second plenary was all about state specialists in the field: Arnold Ganser from No reason to stop an active life”. of the art in MDS. Ulrich Germing Hannover Medical School and Wolf- Unfortunately and as an irony of fate, highlighted the pros and cons of the current Karsten Hofmann from the University Dieter Mollenhauer died only two weeks WHO classification and gave a perspective Hospital Mannheim. prior to being expected to give his speech. what might be changed in upcoming As already proven successfully in After Dr. Ursula von der Leyen, the classifications. Detlef Haase (Germany) and former meetings, this symposium aimed to German Federal Minister of Labour and Peter Greenberg (United States) lectured on allow young investigators enough time to Social Affairs who worked as a physician cytogenetics in MDS and the revision of present their work to the scientific at Hannover Medical School prior to her the IPSS. The session closed with an oral community and to use interactive formats career in politics, had presented her talk on presentation by Ulrich Lehmann (Germany) whenever possible to create a stimulating “The challenge of an aging generation”, the on one of the hot topics in MDS research: atmosphere throughout the meeting. The winners of the “Young Investigator Award” MDS with fibrosis and its overlap with organizers abandoned parallel sessions of the MDS Foundation amounting to myeloproliferative neoplasms. from the congress schedule to allow every $50, 000 for each awardee were presented participant to attend every talk held during by Stephen Nimer and Arnold Ganser. the congress. Finally, some attendees of this international The first day of the symposium started congress might have been torn out of their with two morphology workshops for both meditativeness when the closing lecture on beginners and advanced morphologists. “Rudolf Virchow, Robert Remak and the Attendees and faculty were deeply cellular elements of the blood” was involved in discussions on morphological presented by Professor Johanna Bleker from evergreens such as the issue of evaluating the Humboldt University of Berlin: She the medullary blast count, drawing the line challenged the majority of the auditorium between MDS and MDS/MPN entities as with a one hour lecture in German!
2 INTERNATIONAL SYMPOSIUM ON MYELODYSPLASTIC SYNDROMES
low and high risk MDS, respectively. Later Berlin as one of the most vibrant and that day, four researchers were awarded dazzling cities in Europe, full of unique with the “Tito Bastianello Award” for the spots and locations, surely excited many of best abstract. During this session Daniel the congress participants. One of these Nowak (Germany) confronted the audience spots was the “Wasserwerk” chosen as with data on the establishment of a low risk location for 2013’s gala dinner. The guests MDS xenograft mouse model and could enjoyed excellent food, drinks and show that mesenchymal stem cells promote stimulating conversations in a unique engraftment of human MDS cells in mice. surrounding accompanied with fine live This work was very actively discussed music by Andrej Hermelin and Band. and could be a real breakthrough in MDS In conclusion, the meeting in Berlin research. Moreover, the crucial role of was an event that had everything: highly bone marrow environment in MDS was interesting scientific data, high quality highlighted by the work presented by Sten The following session chaired by John plenary talks, intensive discussions, Jacobsen (United Kingdom) on the Bennett was dedicated to diagnostic and contemplative and reflective moments and following day in the 6th plenary session of therapeutic challenges of MDS and their last but not least moments of (sometimes the symposium. This final session was “MPN relatives” as CMML and RARS-T. unintentional) entertainment. As the chair- chaired by Steven Gore (United States) To honour one of the great mentors of persons of this symposium we would like who will also be the host of the 13th MDS hematology in general and MDS in to thank the MDS Foundation for their symposium in Washington, DC in 2015. particular, John Bennett, Ghulam Mufti trust in our capability to organize a (United Kingdom), and David Bowen Similar to previous meetings a well- stimulating meeting of highest scientific (United Kingdom) outlined the life and attended and even crowded patient forum quality which also allowed to renew work of Terry Hamblin, who had passed was held in Berlin as well. Active friendships and to make new friends. away in 2012, in contemplative, participation of the attending patients and Furthermore we are thankful to the people affectionate and entertaining words. relatives on the one hand and the from Kenes International who perfectly Thereafter, David Bowen gave the informative and entertaining performance did the “non-scientific” organization of dedicated “Terry Hamblin Memorial of Aristoteles Giagounidis and Uwe this meeting. We certainly enjoyed having Lecture” on CMML and was honored with Platzbecker (both from Germany) made you all with us in Germany and especially the Terry Hamblin medallion. this forum a great success. in Berlin. The day continued with the session “What can MDS specialists learn from...”. This format was newly introduced to the MDS symposium to confront the MDS the myelodysplastic syndromes foundation, inc. community with new input from other even very rare diseases with regard to THANK YOU for attending pathophysiology. Chaired by Mario Cazzola The 12th International (Italy), the plenary speakers Marcin Symposium on MDS Wlodarski (Germany), Christoph Klein (Germany), and Jaroslaw Maciejewski Berlin, Germany • May 8–11, 2013 (United States) highlighted key features of childhood MDS, rare genetic diseases Educational Webcast and Video Podcast associated with bone marrow failure, and of all plenary sessions are now available overlap of bone marrow failure and MDS, http://webcasting.kenes.com/MDS2013/. respectively, and hopefully stimulated the These expert talks can be accessed from attending researchers to undertake new home/office computers and even on efforts in order to further elucidate the iPod video, iPhone or iPad. biology of MDS. On Friday May 10th, the congress began with two plenaries on treatment of
3 INTERNATIONAL SYMPOSIUM ON MYELODYSPLASTIC SYNDROMES
HIGHLIGHTS FROM 12TH INTERNATIONAL SYMPOSIUM ON MYELODYSPLASTIC SYNDROMES May 8–11, 2013 BERLIN, GERMANY
4 INTERNATIONAL PROGNOSTIC SCORING
LATEST NEWS ON THE REVISED INTERNATIONAL There is also a user-friendly iPhone App PROGNOSTIC SCORING SYSTEM FOR MDS for the Basic calculator tool accessed through the Apple Store by searching for uses the same set of parameters as the ‘IPSS-R’. These calculator tools, developed original IPSS, but in cludes five rather than by members of the IWG-PM under the aegis three categories of chromosomal abnor- of the MDS Foundation, are derived from malities, as well as new cutoff values for the article in Blood. 120:2454–2465, 2012. Developed by the International Working blasts and blood cell counts. For more TECH IT OUT AND Group for the Prognosis of MDS (IWG-PM) information, please see the study in the under the aegis of the MDS Foundation, Inc. DOWNLOAD OUR Journal of Clinical Oncology (abstract): Italian Study Supports Use http://jco.ascopubs.org/content/early/20 FREE APP! of Revised International 13/06/24/JCO.2012.48.0764.abstract Prognostic Scoring Sys tem NEW ADVANCED IPSS-R Results of a recent Italian study show CALCULATOR TOOL: that the Revised International Prog - nostic Scoring System (IPSS-R) has In addition to the ‘Basic’ IPSS-R calculator significantly higher predictive power tool which incorporates the major clinical for leukemia-free and overall survival variables used to determine prognostic risk in myelodysplastic syndromes (MDS) category (marrow blasts, cytogenetics, patients than the older International hemoglobin, neutrophil and platelet levels) Prognostic Scoring System (IPSS) and as well as age, there is now an ‘Advanced’ the World Health Organization classifi- IPSS-R calculator tool which also includes cation-based Prognostic Scoring System ‘differentiating features’ (performance (WPSS). The Italian study compared the status, serum ferritin, LDH, beta-2 predicted outcomes of 380 MDS patients microglobulin and marrow fibrosis) which as de ter mined by the IPSS-R, IPSS, are additive to the basic variables. These and WPSS with their actual survival differentiating features are only applicable outcomes to determine which prognostic for survival (not AML evolution). The scoring system best predicted survival. URLs to access these calculator tools are: The origi nal IPSS was developed in 1997 BASIC: http://ipss-r.com as a tool to predict survival outcomes ADVANCED: http://advanced.ipss-r.com among MDS patients based on their BASIC chromo som al abnormalities, percentage of http://www.mds-foundation.org/calculator immature stem cells (blasts), and num - ADVANCED: http://www.mds- ber of low blood cell counts. The IPSS-R foundation.org/calculator/advanced Italian study content reprinted from The MDS Beacon (www. mdsbeacon.com) ©2013 Light Knowledge Resources The MDS Beacon is an online service provided by Light Knowledge Resources, an independent Internet publishing company based in Yardley, Pennsylvania. The Beacon provides objective and unbiased news and other information for the myelodysplastic syndromes community. http://www.mdsbeacon.com
5 INTERNATIONALINTERNATIONAL SYMPOSIUM SYMPOSIUM ON ON MYELODYSPLASTICMYELODYSPLASTIC SYNDROMES SYNDROMES
of the patients’ event in Germany. Our joint These were questions some of us asked venture included several program changes, themselves slightly nervous on the many translations, flyer adjustments, poster morning of the 11th of May. As a patient discussions, promotion concepts, telephone and as one of the organizers I may answer conferences with minutes and so on, but all these questions with “YES”! Fortunately in all certainly more than 100 emails “yes” to all of them as the evaluation forms between all of us. To have three or four of the participants told us afterwards. emails per day on the topic was normal for With more than 50 participants from the last two weeks prior to the event. Germany, United Kingdom, Spain, May 2013: However, the patients’ day showed that it Argentina, Denmark, Netherlands and was all worthwhile. By teamwork and Sweden and even with a lady from Mexico The MDSF in Berlin collaboration over the months a very profes- connected by Skype we began our event. sional and successful event for the patients Bergit Kuhle, MDS-PAT-IG As a patient, I felt quite familiar in a and their families was created. I am thankful Germany conference room filled with people all to have been on the organization team. related to MDS. It was a great place to be The 11th of May 2013 for information and support. Although I am in my eighth year of the disease and though The MDS Forum for patients and How many MDS people would finally I am certainly well educated on my their families was held on May 11, 2013 show up beyond the number of registrants? diagnosis, I still got a variety of useful in the Maritim Hotel in Berlin, Germany. Would the patients sufficiently interact, so answers over the day from other patients The event was part of the Scientific that it would be beneficial for everyone? and caregivers based on their own research Symposium of the MDS Foundation from Would the quality-of-life-session manage and personal experience. May 8–11, 2013. to touch the patients on the emotional level In the first block of the morning we so that they would open themselves and My Personal Approach focused on the importance of patient talk frankly about their situation? Would organizations. German and English I have two reasons to be part of the they feel comfortable with the atmosphere representatives spoke about their MDS community. First I have been an and the catering? Would the fact that the commitment for patients and family MDS patient for more than seven years location was a Four-Star-Hotel be okay? members. In a team we then held our now and second I have been connecting Would we have enough breaks in between quality-of-life session with questions like with patient organizations and European for everybody to relax? Would the “What if you wake up and your MDS is and International patient committees for scientific sessions in the afternoon be in a gone, how would you react? “Despite MDS quite a while. I am a representative of lay language and easy to follow? Would the what’s on your bucket-list ?” “What does the German “MDS-Patienten-Interessen- technical equipment and internet reliably quality of life mean to you?” Interaction Gemeinschaft (MDS-PAT-IG)”, which can function? Would the simultaneous and discussion were good and emotional. be translated as “Community of Interest for translation from English to German and We shared one and a half valuable hours. MDS Patients”. The umbrella group behind vice versa make the attendees discuss in the it is the “Leukämiehilfe Rhein-Main e.V. plenary despite their earphones? The original Spanish MDS awareness (LHRM)”, a patient support organization film, presented in English with German since 1991 which covers rare blood malig- subtitles, was a five minute attraction for nancies such as leukemia and lymphomas. the attendees. The film was presented by the representative of AEAL, the Spanish Preparations patient organization, and it touched In January 2013 we already started with people’s hearts. the preparations for the patients’ event. In the movie, a young waiter and an “We” were representatives from various elderly customer are having a short patient support organizations, institutions conversation in a café. The customer turns and countries (Germany, United Kingdom, out to be an MDS patient, who has been Spain, USA) conducted by the MDS taking a new drug for a while making him Foundation ladies in charge. The German red blood cell transfusion independent. He “MDS-PAT-IG”, under her umbrella-group again is able even to travel, having “LHRM” was responsible for the promotion regained a lot of his old stamina. Also the
6 INTERNATIONAL SYMPOSIUM ON MYELODYSPLASTIC SYNDROMES father of the waiter obviously suffers from MDS, but he is much worse off. “Ask your doctor then, he should know about”, is the last sentence of the customer. Hearing the good news the waiter runs to his father to tell him about the possibility of a potential therapy. Here the film ends. It is not about any specific or real drug. But it’s why you should want as much information about treatment options as possible. Ask your doctor and talk to MDS fellows! Be persistent and inquisitive! In the afternoon, we were proud of having two very reputable MDS experts with us: Professor U. Platzbecker (Dresden) and Professor A. Giagounidis the breaks. Due to the support of Q&A panel of the physicians at the end of (Düsseldorf). Their session covered the CELGENE we were able to install this the event, when everybody is already tired most common and current treatment game properly in German language. or when there are only a few minutes left to options, including the likelihood of After the official end of the patients’ ask questions in between two scientific oral response for low and high risk MDS event there was a lot of informal presentations in a row. Patients only have patients. Even new investigational drugs networking going on between those time to get to know each other during the were discussed. Eligibility for trials and committed to MDS for at least one more lunch and coffee breaks. No, what we need criteria to be a possible transplant hour. The library of our German patients’ are self-educational patient-blocks candidate were further important issues. organization MDS-PAT-IG booth had a lot embedded in the program! And also The two professors presented their of printed material about MDS to offer. patients on the panel! Patients definitely session in a dialogue manner: easy to There you also could find the printed drafts benefit from “working” with other patients. follow, lay language, relaxed and cool, but of the “Building Blocks of Hope” published on the other hand high-standard, interesting by the MDS Foundation in German. MDS and informative. More than we ever had people were very interested in the booklet. expected from a scientific session. Thank To Learn From the Patients’ Day you very much ! The audience was excited. Another highlight was our MDS Quiz It was not my first patients’ day, so by “MDS-Verstehen” in English “To comparing I can tell, it was a very understand MDS” or shorter “MDS- successful one. Why? Through the QoL Genius”. This game in the “Who Wants To session, we made patients and their Be A Millionaire” style can be played on caregivers exchange crucial experience of three levels to extend one’s knowledge of leading their life despite MDS. Once having the disease and its context (http://quiz.mds- talked to one another, many patients or As our two professors demonstrated by patienten-ig.org). People at the patients’ partners felt self-confident enough to talk in their scientific dialogue session there are day liked it very much and played it during front of the plenary. It became evident that diverting alternatives to educate on the partners and family have a lot of power to MDS disease than mere frontal teaching. You should want as much research, to be an advocate of the patient, to The goal must be to catch the audience’s participate in treatment decisions and to attention and to keep it over the session. information about treat- work with the doctors. Patient days should This means thinking about teaching ment options as possible. not only live on external scientific talks of methods is a must. Too much external input the physicians, but develop their synergy will not lead to well-educated and compliant Ask your doctor and talk from the concerns and needs and above all patients, but a well-balanced mixture of to MDS fellows! Be from the personal experience and exchange, input and support will do the job. knowledge of the patients and their The results on our evaluation forms persistent and inquisitive! families. Many patients’ days only offer a confirmed that we were on the right way.
7 Personal Note Stauffenberg-Street. But Bob could not I was supposed to meet my MDS fellow come. After 15 years of low-risk-MDS his and soul mate Bob Weinberg in Berlin, disease converted to AML in February long-standing board member of the MDS 2013 and, being scheduled for a transplant, Foundation. At ASH in December 2012 in he died from the high intensity chemo in Atlanta we made plans to do some April. I was not the only one who missed sightseeing in Berlin together after the him terribly at the Symposium and at the official Symposium and after the patients’ Patients’ Forum. He would have contri- event. I would have started our tour with buted a lot, as he always had done before. the Memorial of the Resistance-Fighters But I hope he looked down on all of us in against Hitler on July, 20th 1944 just the Maritim’s united in the fight against opposite the Hotel Maritim in the MDS and said: “Well done!”.
YOUNG INVESTIGATOR GRANT PROGRAM
2013 Young Investigator Grant Winners: Dr. Hideki Makishima accepting the award on behalf of Chantana Rakpan (L) and Taly Glaubach, MD (R) Congratulations Young Investigator Grant Winners! Chantana Rakpan, MD Cleveland Clinic Taly Glaubach, MD Anne and Robert H. Lurie Children’s Hospital of Chicago
We would like to thank Gabrielle’s Angel Foundation for Cancer Research for their generous grant in the support of young investigators through the MDS Foundation.
8 ABOUT THE FOUNDATION Who Are We?
The MDS Foundation, Inc. is an inter- national organization established in 1994 by world renowned researchers dedicated to further scientific knowledge, patient support, and education in the myelodys- plastic syndromes (MDS). The Foundation is based on the premise that international cooperation will accelerate the process leading to the control and cure of MDS. What is MDS? The myelodysplastic syndromes are a group of bone marrow disorders resulting in the ineffective production of normal mature blood cells. Many patients experience anemia from the lack of effective red blood cells, thereby requiring frequent blood transfusions. A shortage I of white blood cells may cause physicians and nurses actively engaged in Numerous Face to Face Patient Forums malfunctioning of the immune system searching for a cure of the disease. Our in multiple cities with presentations by resulting in infections. Insufficient platelets Nurse Leadership Board is comprised of local physicians I can result in excessive bleeding. In about specialized nurses sharing information and Online Patient Forum monitored by one-third of MDS patients, the disease teaching others how to care for MDS experts transforms into acute myelogenous patients. Together, the Board of Directors I Designation of Centers of Excellence leukemia (also known as AML). and the Nurse Leadership Board consist of (COE) meeting the highest standards for 44 members representing 14 countries. diagnosis, treatment, and patient care What We Do Please see our website www.mds- I foundation.org for a complete list of our Patient Referrals to COEs The MDS Foundation provides research I board members and other vital information Building Blocks of Hope © handbook (in grants for scientific investigators, sponsors about the disease and the Foundation. print or online) with complete written international working groups of scientists and video information on the care and and physicians to further diagnostic, Our Fundraising treatment of MDS prognostic and treatment techniques, and I Efforts The MDS News Email Alerts disseminates information on state-of-the- I art research, clinical trials and treatments As a tax exempt non-profit, section 501(c)3 Biennial International MDS Symposia among the professional and patient organization, donations to the MDS for professionals & continuing medical communities. The Foundation also refers Foundation qualify for a U.S. tax deduction and nursing education programs patients to its collection of “MDS Centers of (it is essential to consult with your tax Excellence,” maintains an electronic forum advisor to confirm your own tax situation). Donations can be made on our on its website for interaction and support The MDS Foundation actively seeks website by credit card (through among patients, and provides educational financial support for our mission and PayPal), or by check made programs for both health care professionals programs to continue providing services payable and addressed to: and patients and their families. such as the following: I The MDS Foundation, Inc. International Working Group for Where We Are Prognosis in MDS (IWG-PM) 4573 South Broad St. I Suite 150 The Foundation is located in Yardville, Young Investigator Research Grants I Yardville, New Jersey 08620 New Jersey and is active in more than 59 Hot-line for patients and caregivers to regions around the world. Our Board of speak with our Patient Liaison at 800- Directors consists, for the most part, of MDS-0839 www.mds-foundation.org
9 MEETING HIGHLIGHTS AND ANNOUNCEMENTS
THE AMERICAN SOCIETY OF HEMATOLOGY 54TH ANNUAL MEETING & EXPOSITION • DECEMBER 2013
On behalf of the MDS Foundation and our Board of Directors, please join us for our upcoming Satellite Symposium: Major Therapeutic and THE MDS FOUNDATION PRESENTS David Scadden, MD Molecular Advances MAJOR Massachusetts General Hospital Center THERAPEUTIC for Regenerative Medicine Boston, MA in MDS AND Friday, December 6, 2013 MOLECULAR Arjan van de Loosdrecht, MD, PhD ADVANCES VU University Medical Center 7:00–11:00 am Amsterdam, The Netherlands IN MDS Hilton New Orleans Riverside AGENDA New Orleans, Lousiana 7:30 am – 7:40 am TARGET AUDIENCE DECEMBER 6, 2013 Program Overview and Objectives
BREAKFAST SYMPOSIUM 7:00 to 11:00 am This activity is intended for physicians, Hilton New Orleans Riverside 7:40 am – 8:15 am oncology nurses, nurse practitioners, NEW ORLEANS, LOUISIANA Prognostic Scoring Systems for physician assistants, and other health care Therapeutic Decision-making in professionals interested in the treatment MDS Patients PRE-REGISTRATION: and management of patients with http://ceknowledgecenter.com/mds Peter Greenberg, MD
Does not guarantee admission— Myelodysplastic Syndromes. please arrive early. 8:15 am – 8:50 am LEARNING OBJECTIVES This is a Friday Satellite Symposium preceding the 55th ASH Annual Meeting. Novel Agents and Combinations for the Treatment of MDS (including updated Upon completion of this course, the results of thrombopoietin receptor participant will be better able to: PROGRAM OVERVIEW I agonist trials in MDS) To understand the clinical and biologic Recent developments in clinical, Pierre Fenaux, MD, PhD features which are useful for classifying immunophenotypic, and molecular 8:50 am – 9:25 am MDS and aid in therapeutic decision- risk analyses have generated major Improving the Role of Flow Cytometry making. advances for aiding management of I for the Characterization of MDS To understand the current therapeutic patients with myelodysplastic syn- Arjan van de Loosdrecht, MD, PhD options for MDS patients whose disease dromes (MDS). These methods and has not responded to standard therapy. current therapies, with novel agents and 9:25 am – 10:00 am I their combinations, will be discussed. To know the current status of treatments Marrow Microenvironmental Also discussed will be the biologic aimed at improving severe thrombo- Abnormalities in MDS implications of marrow cell molecular cytopenia in MDS patients. David Scadden, MD I mutations and micro-environmental To understand how the use of flow abnormalities for improving the 10:00 am – 10:35 am cytometry aids diagnosing and assessing understanding of pathogenetic lesions Molecular Abnormalities and prognosis of MDS patients. underlying this disease. their Impact on Prognosis of MDS I To understand the impact of microenvi- Benjamin Ebert, MD, PhD ronmental abnormalities on hematopoiesis FACULTY 10:35 am – 11:00 am in MDS. Questions/Answers/Discussion I To understand pathogenetic molecular Benjamin Ebert, MD, PhD features contributing to MDS progression. Brigham and Women’s Hospital Boston, MA VISIT THE Pierre Fenaux, MD, PhD Hôpital St Louis, Paris 7 University MDS FOUNDATION BOOTH: Paris, France #2813 Peter Greenberg, MD Stanford University Cancer Center Stanford, CA
10 THE 13TH INTERNATIONAL SYMPOSIUM ON MYELODYSPLASTIC SYNDROMES
11 INTERNATIONAL SYMPOSIUM ON MYELODYSPLASTIC SYNDROMES Foundation Plans International Symposia Through 2017 The MDS Foundation has approved applications for the next two International Symposia. These symposia are scheduled for 2015 in Washington, DC, and 2017 in Valencia, Spain.
2015 – PLAN TO ATTEND 2017 – PLAN TO ATTEND The 13th International Symposium on MDS The 14th International Symposium on MDS April 29–May 2, 2015 • Washington, DC USA Spring 2017 • Valencia, Spain Chairman: Steven D. Gore, MD Chairman: Guillermo Sanz, MD PRACTICE AND TREATMENT SURVEYS MDS PRACTICE AND TREATMENT SURVEY FOR HEALTHCARE PROFESSIONALS MDS PATIENT QUALITY OF LIFE SURVEY In 15 Minutes You Can Help Improve The Diagnosis Thank you so much for participating in and Treatment of MDS Patients this very important survey. We are looking forward to learning from you The myelodysplastic syndromes (MDS) about the impact that MDS has on your are a heterogeneous group of myeloid quality of life. malignancies with variability in clinical This questionnaire contains questions presentation, disease trajectory, treat- concerning your MDS symptoms, the ment goals, and expected outcomes. treatment you are receiving, and the Therefore, the treatment of patients with impact that MDS and treatment may have on your life. myelodysplastic syndromes (MDS) often differs from patient to There is no right or wrong answer. Please do your best in patient. Outcomes for patients with MDS can be enhanced through providing a response to each question. the use of individualized, risk-adapted strategies for treatment Your responses will be kept confidential and will only be which take into account the treatment goals based on a patient’s risk reported in combination with the results from other MDS status. The International Prognostic Scoring System (IPSS) has patients who participate in this survey. been recently revised (IPSS-R) with modified risk attributes and The information that we gather from this survey will be used corresponding risk categories. This survey is designed to evaluate to develop programs to assist patients and their families, to current health care provider practice patterns for the diagnosis and educate physicians, nurses, and other allied healthcare treatment of MDS. Case studies are included to investigate professionals, and to work with governmental and private familiarity and application of the IPSS and IPSS-R. The MDS agencies/companies to provide better care and service to you, Foundation will compile the results and will provide a summary of the MDS patient. the findings on the MDS Foundation website. We appreciate you Thank you again for your participation! taking the time to complete this survey. Access This Link to Complete Your Survey: Access This Link to Complete Your Survey: https://www.surveymonkey.com/s/MDSPatientQoLSurvey https://www.surveymonkey.com/s/MDSF-PTSurvey
12 FROM THE FOUNDATION
BUILDING BLOCKS OF HOPE
Strategies for Patients and Caregivers LIVING with MDS
On behalf of Sandra Kurtin and The MDS Foundation we are pleased to “It took me three days, but I have read the entire BBOH announce the arrival of the BUILDING book. What a magnificent undertaking on your part. BLOCKS OF HOPE, a global print and online patient advocacy initiative, Your book is the most comprehensive source I have read. providing a personalized educational My understanding of MDS and possible treatment options program for the patient and caregiver to has been greatly increased. Thank you for all your work. prepare, participate, and LIVE with MDS. The digital book is quite striking and – Steve Siehr easy to read online. To view the digital version of the Building Blocks of Hope, please use the following link: A PRINT AND ONLINE EDUCATIONAL TOOL http://buildingblocksofhope.com I You can conduct a search using key phrases which will highlight any page that If you would like to download the Building includes that phrase. Blocks of Hope for printing and I Individual pages can be printed to create a personalized educational tool. personalization, please use the following I link: http://www.mds-foundation.org/wp- My MDS Plan, in particular, can serve as a useful tool for patients to track their content/uploads/2013/03/BBOH_2013_Ha progress and organize their information. ndbook_full-book_lores.pdf. I You will find embedded videos and slide sets, in the digital version, to augment We will be working with the MDS patient and caregiver education. Foundation Board of Directors, Inter- I You can link directly to global resources for clinical trials, drug information, bone national Nurse Leadership Board (MDSF- marrow transplant services, and other support services. NLB) and colleagues from our MDS Centers of Excellence to translate and adapt the Building Blocks of Hope (BBoH) these translations are complete they will be and distribute individual pages, without into multiple languages in order to reach added to our website. modification, as needed to support patients as many MDS patients as possible. We are The online versions of the BBoH will and caregivers LIVING with MDS! currently translating the BBoH into French, be accessible to you at any time, and the Translations in Danish, French, German and Spanish. We will also be pdf format can be downloaded for local German, and Spanish coming soon! adapting the English version for MDS use. Although these pages are copy- Canadian Adaptation available now. patients in the UK and Canada. Once righted, we extend an invitation to print
13 MDS ACADEMY IT HAS ARRIVED — THE MDS CLINICAL TOOLBOX Practical Tools for Clinical Management of MDS
A variety of clinical tools that will be maintained on the MDS Foundation website including the IPSS-R calculator, summaries of the most recent published data, links to other online resources and tools to assist patients/caregivers to take an active role in their MDS care.
14 MDS AWARENESS
BECOME AN MDS ADVOCATE TODAY! Have You Told Someone About The MDS Foundation?
Spreading Awareness Any Way You Can – Thank You Austin Pearson and Michigan State University!
MDS FOUNDATION STORE NEW MDS AWARENESS ITEMS AVAILABLE! New MDS awareness items are now available through our online store and our popular Hope for MDS wristbands are still available. Have you told someone about the MDS Foundation recently? Help promote MDS awareness any way you can and purchase your items today! For a donation of your choice, receive your custom item(s) as a “Thank You” for your generosity.
3 WAYS TO ORDER:
1. ONLINE CLICK to SHOP ► ► http://www.mds-foundation.org/merchandise/ 2. BY PHONE with credit card at 800-MDS(637)-0839 3. BY MAIL with check enclosed to: The MDS Foundation, Inc. 4573 South Broad Street, Suite 150 Yardville, NJ 08620 Raising awareness is a year-round job!
Thank you for your support.
15 IN MEMORY OF ROBERT WEINBERG The MDS Foundation Remembers Bob...
Earlier this year, the MDS Foundation and the larger community of MDS patients, caregivers, physicians, nurses and patient/ health care advocates lost a dear friend and indefatigable supporter, advocate, and coll- eague, Robert (Bob) Weinberg. Bob lost his battle with MDS, which evolved to an acute leukemia that was unresponsive to therapy. Bob served on the Board of Directors of the MDS Foundation since 2001 and on its Executive Committee since 2010. He was an attorney who practiced law at Pepper Hamilton LLP in Philadelphia. When Bob was diagnosed with MDS in 1998, he sought out the Foundation and became its most active, non-physician Board member. Bob worked tirelessly for the Board; he was involved in every one of its functions – drafting by-laws, overseeing our financial statements, reviewing our finances and our communications with the community, making sure that the website and our patient information line provided clear and accurate advice, helping us pick the sites where the meetings were held, organizing and choosing locations for the patient forums, and of critical importance, serving as a clear voice and advocate for MDS patients to the Board. Whenever heavy lifting was required, Bob was always the first to volunteer or to make sure that the physician volunteers functioned as a team, in an effective and As a Nurse and Nurse Practitioner working with cancer patients, including patients with MDS, for communicative way. Bob was a superb almost 30 years, I have met some amazing individuals who inspire me to continue my work in this field. communicator, and he helped us all, in count- Robert Weinberg, or as I knew him Bob, was one of those individuals. Bob was diagnosed with MDS in 1998 less ways, with small and large acts of at the age of 48 when we knew very little about this disease. From the day he was diagnosed, Bob became kindness, with his insights and energy, and one of the greatest advocates for patients and caregivers living with MDS. He worked tirelessly promoting with his human touch, his powerful humanity. scientific discovery in the hope of improving the lives of all patients with MDS. He joined with the MDS Bob’s wife, Rochelle, and his daughter, Foundation and offered his insights and services as a way to achieve these goals. Daniella, have vowed to help the Foundation in its mission to aid in the I first met Bob in 2005 as a volunteer member of a newly developed nursing advisory board. Over education of the public about MDS and in the past eight years Bob continued to inspire me. He was always in support of oncology nursing offering the education of health care professionals, encouragement and congratulations to the members of the MDS Foundation Nurse Leadership Board and to support the research and researchers for their work in support of MDS patients, their caregivers, and oncology professionals. He continually who are striving to better understand this worked to find better ways to support MDS patients and their caregivers, and donated his time disease and advance new cures. Bob loved generously toward finding better ways to treat and support patients with MDS. Bob graciously shared his dogs Milkshake and Cognac, he loved his journey in two testimonials which have been included in the Building Blocks of Hope program his family, his life and he loved us. We miss (www.buildingblocksofhope.com). He loved his family, his dogs (Milkshake and Cognac), and will him very much. always hold a special place in my heart. In fond memory of Bob Weinberg, Sandy Kurtin 16 REPRINTED FROM: PRESS OF ATLANTIC CITY Margate Woman Commits to Aid Families Dealing With MDS
ELISA LALA Staff Writer Wednesday, August 7, 2013 When a person is diagnosed with a life- threatening illness, the whole family suffers. Understanding this on a personal level, Margate resident Rochelle Ostroff-Weinberg recently held a support group for spouses and loved ones of people with MDS in her living room. She is the widow of Robert J. Weinberg, who died in April after fighting myelo- Rochelle Ostroff-Weinberg hosted an MDS Support Group meeting in her home in July. dysplastic syndrome, or MDS, for 15 years. “At Bob’s funeral, I set a promise in The event, held July 27, was called front of 150 people present to do good, “The MDS Spouse: Coping and Caring” important work for and through the MDS and Rochelle said its purpose was twofold: Foundation,” Rochelle said. “Yet, I First, to pass on the knowledge she and wanted to make it mine and something that her family acquired during the years of would reflect a component of support coping and coming to terms with her needs to which I related personally and husband’s illness. genuinely. I see that as my role now, to “The other family members can feel reach out to others who share — are living lost, helpless, scared, worried, traumatized, through — a similar experience.” confused or conflicted,” Rochelle said. “I The MDS Foundation, established by an know personally. Bob had MDS for 15 international group of physicians and years. I am a veteran spouse.” researchers to provide an ongoing exchange Second, to continue to support the MDS of information relating to MDS, was the Foundation, which Robert was involved first foundation in the world dedicated with as an executive board member. solely to this disorder. Robin Roberts, the anchor of ABC’s morning show Good Morning America, also had MDS. Rochelle said the support group was both well-received and well-attended by the community and she plans to host more, possibly in October and April. Support group attendee Jimmy Wong, the son of an MDS patient who died in January noted, “It was great to share and experience with others who are living with MDS,” he said. “It was hopeful to see others still living a good quality of life with MDS.” To learn more about the MDS Foundation or Tania and Jimmy Wong, surviving wife and the disorder, visit www.mds-foundation.org. son of MDS patient German Wong.
17 REFERENCES IN MDS
Highlights of Latest J Clin Oncol. 2013;31(21):2671–2677. Response analysis was conducted (http://www.ncbi.nlm.nih.gov/pubmed/ based on revised IPSS cytogenetic risk Literature in MDS 23796988) stratification in 87 MDS patients treated with low dose decitabine Suneel D. Mundle, PhD A revised IPSS (IPSS-R) scoring system (15–20 mg/m2/d¥ 5 per course). Among Rhea Mundle was reported in 2012, which included both disease and patient related para- patients with abnormal cytogenetics the Listed below are citations of some new meters. It broadened consideration for overall response rate was approx- publications relevant to MDS (pathogenesis, cytogenetic abnormalities and severity imately 61% with 41% achieving clinical characterization, management, of cytopenias. In the present validation complete cytogenetic response. Survival etc.). To access the complete article log on study, IPSS-R was applied to 380 MDS was significantly better in cytogenetic to www.pubmed.gov. cases in Italian regional database responders and the survival in poor/very EPIDEMIOLOGY AND OUTCOMES enrolling patients from the city of poor karyotype patients was comparable RESEARCH: Rome. When compared with IPSS and to those with good/very good karyotypes. 1. Sperr W et al. Proposed score for WPSS, the predictive ability for overall 2. Duong V et al. Poor outcome of survival of patients with myelodys- survival and leukemic transformation patients with myelodysplastic syndrome plastic syndromes. Eur J Clin Invest. were both significantly superior with after azacytidine treatment failure. Clin 2013;43(11):1120–1128 (http://www. IPSS-R (P<0.001 vs. IPSS or WPSS). Lymphoma Myeloma Leuk. 2013; Sept ncbi.nlm.nih.gov/pubmed/24102333) TREATMENT: 17 [Epub ahead of print]. (http://www. Analysis of IPSS-related and -indepen- ncbi.nlm.nih.gov/pubmed/240541590) IMiDs: dent variables in 400 patients with This retrospective single institution 1. Caceres G et al. TP53 suppression primary MDS within Austrian MDS study with 59 patients showed that in promotes erythropoiesis in del (5q) platform in a multivariate analysis salvage therapy after azacytidine failure MDS, suggesting a targeted thera- demonstrated that IPSS, ferritin (> or 31% response was obtained with inten- peutic strategy in lenalidomide-resistant ≤ 900 ng•mL), age (<70, 70–79 or >80 sive chemotherapy, while no response patients. Proc Natl Acad Sci USA. 2013; years) and HCT-CI comorbidity had was seen with decitabine. Median 110(40):16127–16132. (http://www. survival predictive value. Using a overall survival for the entire cohort ncbi. nlm.nih.gov/pubmed/24043769) scoring system with these variables 4 after azacytidine failure was 5.8 months. survival risk groups could be stratified. Cenersen; a 20-mer antisense oligo- nucleotide complementary to TP53 3. Xicoy B et al. Results of treatment with 2. Lucioni C et al. Costs and quality of exon 10, was shown to suppress azacitidine in patients aged ≥ 75 years life in patients with myelodysplastic nuclear p53 in CD34+ cells isolated included in the Spanish registry of syndromes Am J Blood Res. 2013;3(3): from del (5q) patients with a myelodysplastic syndromes. Leuk 246–259 (http://www.ncbi.nlm.nih.gov/ proportionate increase in erythroid Lymphoma. 2013; Sept 16 [Epub ahead pubmed/23997987) burst recovery in vitro. This was of print] (http://www.ncbi.nlm.nih.gov/ Analysis of 17 eligible studies from corroborated by addition of an indirect pubmed/23952246) literature search demonstrated that the p53 suppressor dexamethasone to One hundred seven MDS patients ≥ 75 total medical costs per patient per lower risk transfusion dependent del years age within Spanish registry that year ranged from approximately (5q) patients with acquired drug were treated with azacitidine, were $10,000–20,000 in transfusion inde- resistance. Along with cellular p53 found to have transfusion independence pendent patients to $30,000–50,000 in suppression and expansion of erythroid achieved in 40% cases in whom median transfusion dependent cases, with a precursors, in 5 of the 8 treated survival of 22 months was superior to reduction in quality of life to half during patients, transfusion independence those that did not achieve transfusion development of transfusion dependence. could be restored. independence. The median number of DIAGNOSIS/PROGNOSIS: Demethylating Agents: treatment cycles received were 8 with a cycle delay occurring in 29% cases and 1. Voso M et al. Revised international 1. Li X et al. Cytogenetic response based 47% were hospitalized for infections. prognostic scoring system (IPSS) on revised IPSS cytogenetic risk predicts survival and leukemic stratification and minimal residual Other Agents: evolution of myelodysplastic syndromes disease monitoring by FISH in MDS 1. Neukirchen J et al. Real life experience significantly better than IPSS and patients treated with low-dose decitabine with alemtuzumab treatment of WHO prognostic scoring system: Leuk Res. 2013; Sept 18 [Epub ahead patients with lower-risk MDS and a validation by the Gruppo Romano of print]. (http://www.ncbi.nlm.nih. hypocellular bone marrow. Ann Mielodisplasie Italian regional database. gov/pubmed/24084368) Hematol. 2013: Aug 10 [Epub ahead of
18 print] (http://www.ncbi.nlm.nih.gov/ ahead of print] (http://www.ncbi. 1. Zeidan AM, Linhares Y and Gore SD. pubmed/23934199) nlm.nih.gov/pubmed/24077845) Current therapy of myelodysplastic Alemtuzumab (humanized anti-CD52 Somatic heterozygous ASXL1 mutations syndromes. Blood Rev. 2013;27(5): antibody) treatment of 9 MDS RCMD occurred in 29% of GATA-2 deficiency 243–259 (http://www.ncbi.nlm.nih.gov/ cases demonstrated overall response in MDS patients. These patients with dual pubmed/23954262) five patients (3CR and 2 HI). The abnormality tended to be younger, 2. Kulasekaraj AG, Mohamedali AM, treatment was well tolerated. almost exclusively female and had a high Mufti GJ. Recent advances in 2. Komrokji R et al. Phase I clinical incidence transformation to proliferative understanding the molecular patho- trial of oral rigosertib in patients chronic myelomonocytic leukemia. genesis of myelodysplastic syndromes. with myelodysplastic syndromes. Br 2. Dimicoli S et al. Overexpression of Br J Haematol. 2013;162(5):587–605. J Haematol. 2013;162(4):517–524. the Toll-like receptor (TLR) signaling (http://www.ncbi.nlm.nih.gov/pubmed/ (http://www.ncbi.nlm.nih.gov/pubmed/ adaptor MYD88, but lack of genetic 23869491) 23789936) mutation in myelodysplastic syn- 3. Greenberg PL et al. Myelodysplastic An oral multi-kinase inhibitor rigosertib dromes. PLoS One. 2013;8(8): e71120 syndromes: clinical practice guidelines (http://www.ncbi.nlm.nih.gov/ was administered to 37 MDS patients in oncology. J Natl Compr Canc Netw. pubmed/23976989) with a dose escalation design (560 mg 2013;11(7):838–874. (http://www.ncbi. to 700 mg bid). Dose limiting toxicity No genetic mutation but m-RNA nlm.nih.gov/pubmed/23847220) (gr 3 dysuria and shortness of breath) overexpression for MYD88 was found 4. Greenberg PL. The Multifaceted occurred at 700 mg bid dose level. The in bone marrow CD34+ cells derived Nature of Myelodysplastic Syndromes: clinical activity included 2 marrow from MDS patients. A treatment of Clinical, Molecular and Biological complete remissions in RAEB-1 patients CD34+ cells derived from low risk Prognostic Features. J Nat Compr Canc previously treated with azacitidine. In MDS patients with MYD88 inhibitor addition, 4 patients achieved transfusion led to increased erythroid colony Netw. 2013;11(7):877–885, (http://www. independence and HI. formation indicating a therapeutic ncbi.nlm.nih.gov/pubmed/23847221) 3. Rhyasen G et al. Targeting IRAK1 as potential of MYD88 blockade strategy. a therapeutic approach for myelodys- REVIEWS AND PERSPECTIVES: We would like to thank Suneel plastic syndrome. Cancer Cell. 2013; 24: The following articles provide significant Mundle, a member of the MDS 90–104 (http://www.ncbi.nlm.nih. gov/ review of literature and/or innovative Foundation, for his assistance in pubmed/?term=Rhyasen+and+ IRAK1) perspective on the state-of-the-art in monitoring these important peer- MDS arises from a defective hemato- MDS and identify need for additional review publications on MDS. poietic stem/progenitor cell. Through prospective studies. gene expression analysis in CD34+ cells from MDS and normal marrows, it was found that IRAK1- an immune- modulating kinase- is overexpressed BRAND NEW! and hyperactivated in MDSs. IRAK1 Connect on our improved PATIENT F RUM inhibition may not affect or may actually cause a compensatory and zero in with an MDSF Expert. increase in pro-survival Bcl-2 Look for this new feature on our free online discussion expression. When IRAK1/4 and BCL2 board of information exchanged between patients, inhibitors were combined, the caregivers, and family members. Where else can you cotreatment was proven to induce have MDSF Experts at your fingertips addressing apoptosis and effectively eliminate your unique concerns and personally have your MDS clones, thus making IRAK1 and questions answered? Bcl-2 a drugable targets in MDS. Available on mobile devices PATHOBIOLOGY: through our website 1. West R et al. Acquired ASXL1 mutations are common in patients with www.mds-foundation.org inherited GATA2 mutations and correlate with myeloid transformation. Hematologica. 2013; Sept 27. [Epub
19 PATIENTS & CAREGIVERS LIVING WITH MDS FORUMS
SPREADING THE NEWS WORLDWIDE
HIGHLIGHTS FROM OUR 2013 INTERNATIONAL MDS FORUMS I Gainesville, FL San Diego, CA I Atlanta, GA Berlin, Germany I I Detroit, MI Chicago, IL Rochester, NY I Philadelphia, PA Baltimore, MD I Long Island, NY Indianapolis, IN
PLEASE MAKE SURE TO REGULARLY CHECK OUR ONLINE EVENTS CALENDAR http://www.mds-foundation.org/events and FACEBOOK FOR OUR FREE MEETINGS TAKING PLACE IN A CITY NEAR YOU!
20 SPREADING THE NEWS WORLDWIDE PEOPLE HELPING PEOPLE... 2013 HUNGARIAN MDS PATIENT SUPPORT GROUP Established MDS Patient Support Groups United States I Chicago, Illinois MDS Support Group: Meets on the fourth Tuesday of the month from 1:30–3:00 pm at Northwest Community Hospital’s Cancer Service department (lower level), 800 W. Central Road, Arlington Heights, Illinois. Contact Kim Jensen at [email protected] or call: 847-618-6914. I Lakeland, Florida Regional MDS Support Group: For more information call Vivian Paul at 863-698-5137 or Kathe Dempster at 863-816-8482. I New York, New York MDS Support Group: Contact the group facilitator, Lisa Tomcykoski at [email protected] for further details. I Philadelphia, Pennsylvania MDS Support Group: For more information call the MDS Foundation at 800-MDS(637)-0839 or email Audrey Hassan at [email protected]. I Puget Sound MDS Support Group: For more information call Janine Kowack at 206-992-0609 or email jkowack@ comcast.net. I Southern California MDS Support Group: Meets on the third Saturday of the month at St. Mary Star of the Sea Church, 609 Pier View Way, Oceanside, CA 92054 at 2:30 PM. Contact Susan Pope at [email protected] or call: 760-744-7665. I Stanford Cancer Center MDS Patient & Family Support Group: Meets the first Friday of the month from 1:30 –3:00 pm at the Stanford Cancer Center, 875 Blake Wilbur Drive, Palo Alto, California, 2nd Floor Conference Room CC2105. Contact Group Leader, Lenn Fechter, RN, BSN at: 650-725-0744. I Folsom, California MDS Support Group: For more information call Jalil Fardanesh at 916-984-6468, email [email protected]. 2013 1ST DANISH MDS PATIENT SUPPORT GROUP International I Belgium: Belgische MDS Contactgroep, http://mds-foundation.org/ psg/vlaamse I Canada: Hamilton, Ontario MDS Support Group http://mds-foundation.org/psg/cpsghhs; Toronto, Ontario MDS Support Group, http://mds-foundation.org/psg/cpsgt I Czech Republic: Sdruzeni MDS, http://www.diagnoza-mds.cz I Denmark: MDS DK Patientstøttegruppen, http://www.mds-and-you.info I France: Association Connaître et Combattre les Myélodysplasies, http://asso.orpha.net/CCM I Germany: MDS-Net Deutschland, http://www.mds-net-de.org; MDS-Patienten Interessengemeinschaft (MDS-PAT-IG) http://www.mds-patienten-ig.org I Hungary: Magyar Betegsegít Csoport, http://mdsfoundation.org/psg/magyarbcő I Japan: Japan MDS Patient Support Group, http://www.mdssupport.net; MDS Renrakukai, http://www.geocities.jp/mdsrenraku I United Kingdom: UK MDS Patient Support Group, http://www.mdspatientsupport.org.uk Global MDS Patient Support Groups The overwhelming success of our Patients & Caregivers LIVING with MDS Forums, which allowed patients to meet peers who live in their community, has led us to create permanent support groups worldwide. If you are interested in joining a few other people to help start a needed support group for MDS in your area, please contact us today.
21 SPREADING THE NEWS WORLDWIDE
Featured MDS Patient Our seven talks were: Support Group: 1. The Reason Why We Need This 5. Living with MDS: MDS Patient Support Group A Story of Robert Weinberg Kanagawa, Japan Mika Kojima Miki Iizuka 2. Understanding of MDS 6. Current Therapy for MDS Kiyoyuki Ogata, MD, FACP Kiyoyuki Ogata Kiyoyuki Ogata Metropolitan Research Center for Blood Disorders 3. MDS Flow Cytometry 7. Future Perspective Shin-Yurigaoka General Hospital Eri Kashiwagi Kiyoyuki Ogata The report of their first regional meeting: 4. Fact of Stem Cell Transplant The next regional meeting will be held Twenty-nine MDS patients and their for MDS on November 30, 2013 at the same time families gathered on that meeting. We gave Kiyoyuki Ogata and the same place. seven talks to them and answered many questions asked by them. After that, we enjoyed free time with drinks and cakes and a mini violin concert by my niece, Micca. Three hours passed quickly, and we are sure that the first meeting is successful and useful for participants. We received many very positive responses from participants.
22 PATIENT AND FAMILY CONTRIBUTIONS
PATIENT TESTIMONIALS Patients Speak Out... “I’m looking forward to the Everyone should send away for it. meeting in Chicago and to reading They won’t be disappointed.” “The conference at Emory the Building Blocks of Hope.” University for MDS patients and Pat Thompson caregivers today was informative I’m 71 years old and was diagnosed in “Building Blocks of Hope: Whoever 2008 with MDS 5q deletion. Thank you and it was great to meet and share did this web “story” should be for all your info. stories with other MDS patients thanked by everyone who uses it.” Linda Heller (even if I was the youngest MDS It is fantastic!!! Thank you for spreading patient at the conference).” “You have got to know you have this valuable information. The approach been a big part in helping me was unique and interesting to follow and I hope you come back to Atlanta next year. advocate on my behalf.” explore.” Jennifer Greer Trotter I miss Kirby Stone so very much, but without Raymond W. Malles “Thanks for making such an you bringing him into my life I could not have “What a magnificent undertaking extensive resource (The Building moved forward with getting what I needed on your part.” Blocks of Hope) available to the medically. Thank you with all my heart. patient community.” Your book is the most comprehensive source Krystal Dak I have read. My understanding of MDS and Neil Cuadra “Building Blocks of Hope is great.” possible treatment options have greatly “I have well received the I have only glanced at it on my phone but increased. Thank you for all your work. Building Blocks of Hope binder. without a doubt, it is the most compre- Steve Siehr It is an impressive piece of work hensive information I have found on MDS. conveying a mass of information Beth Mascia See BBoH on page 13. to patients and caregivers.” “I received the Building Blocks of Congratulations to the authors. Hope. It was the most informative Patrick Festy thing I have read about MDS. “I just wanted to thank you again for all your support that you have given me for the past year. I so appreciate it.”
Susan Urban New Ways to Manage MDS – A New Resource For Patients and Loved Ones My mom was diagnosed with MDS type A diagnosis of Myelodysplastic Syndrome (MDS) can be confusing, but arming RARS in October 2012 after 2 yrs of yourself with the information necessary to understand your diagnosis is the first step extreme fatigue. She got to the point of toward making the treatment choice that is right for you. A new MDS-specific episode not being able to even make her own bed of HEALTHY BODY, HEALTHY MIND—a health and wellness program on after being “super-mom” for 36 years. public television—serves as an educational resource for the entire MDS Community. “Upon this scary diagnosis, your Whether you need guidance navigating your diagnosis or you’re trying to help site has been invaluable. Thank family and friends understand what you’re going through, the episode, titled “New you for allowing us to actually Ways to Manage MDS,” provides perspective and reassurance. Three patient stories, understand what MDS is all about.” coupled with key facts about the latest treatment strategies, highlight unique experiences with MDS. Interviews featuring experts Dr. David Steensma, Dana- Kimberly Arment Farber Cancer Institute, United States, Dr. Aristoteles Giagounidis, St. Mary’s “Amazing book Building Blocks. Hospital, Germany, and Dr. Valeria Santini, Careggi Hospital, Italy share additional Wish I had it years ago! Can’t insight on the value of active management regardless of age along with the wait to read more thoroughly.” individualized treatment options patients should be aware of. Korey Yamagata To view this episode online go to http://www.itvisus.com/programs/hbhm/episode_ 2601.asp or to order your free DVD copy today email [email protected] “BBoH – EXCELLENT!!!” or call 800-MDS-0839. Ray Hershman
23 PATIENT STORIES
A 15-year History drug trial. My diagnosis was MDS sub- type Refractory Anemia with Ringed Hello, my name is Ryan Szanto. I am 74 Sideroblasts or RARS. The drug did not years old and have been an MDS patient work for me. It did work for patients with for 15 years. I hope to convey to you my 5q– chromosome malfunction. Results for experiences with MDS I also hope my these patients were amazing. Most of the longevity with MDS will give you hope patients with the 5q– had a significant and encouragement as you live with MDS reduction in their transfusion needs; some During a routine wellness check, I was no longer needed transfusions at all. Half diagnosed with anemia in July 1996. I was way through the trial I had a sense it wasn’t a very active outdoor person and did not working for me, but I went ahead and feel there was anything wrong with me, so completed the trial because I knew the I did nothing about it. The next year, during research collected from me might benefit another routine wellness check, the doctor MDS Patient Ryan Szanto other MDS patients later on. wrote in red pen and circled: Significant In June 2001 I started on blood During these past 15 years I have had 7 Anemia. He recommended I see my transfusions. As of October 2012 I have bone marrow biopsies. MDS is classified primary doctor. I saw him in August, 1997 received 377 units of blood. By June 2004 as high- or low-risk. I am in the low-risk and had blood tests run over a 5 week I was in iron overload, my ferritin was category and my biopsies have not changed period. I was told they didn’t know what 2990 due to the number of blood during these 15 years. was wrong with me. My doctor transfusions. I started iron chelation with a During my first 3 years I could not find recommended I see a hematologist/ drug a called Desferal which is dispensed any non-MDS specialists who knew oncologist, which I did. with an infusion pump for 12 hours a day, anything about the disease. Also during this A bone marrow biopsy was performed 5 days a week. I continued this treatment time there wasn’t much or any research on and it was determined my anemia was due for 1 ½ years. MDS. The first research that took place to MDS. The doctor had me come in once In the fall of 2005 the MDS Foundation was for high-risk patients. I totally agree a week for a CBC for the next 15 months. notified me that there was a new oral drug, with this because they are at greater risk to In January 1999 I started on Procrit Exjade, used to treat iron overload. Exjade come down with leukemia. There is now injections, 30,000 units once a week. was up for FDA approval in Washington, research taking place for high- and low- During the next 5 years and 9 months the D.C. and I was asked to testify as to why risk patients. The good news is there are Procrit injections increased gradually from the drug should be approved. I was thrilled 100+ MDS research centers worldwide. 30,000 to 80,000 units to keep my to go. It would be wonderful to get off that When I was first diagnosed with anemia, hemoglobin at healthy levels. In December pump. I went with 14 other patients who and then with MDS, I was in denial. This 2005, I was switched from weekly Procrit also developed iron overload as a result of went on for 1 ½ years. As time went on I to bi-weekly Aranesp injections. This was a chronic transfusions for MDS, Aplastic realized not many people knew about this blessing. The Aranesp dosage started at Anemia and Thalassemia. Thankfully it disease so I decided to find out all I could 300 mcg for 28 injections and now was approved. I started taking Exjade and I began to keep detailed records of what continues at 400 mcg. I have had a total of 1500 mg daily in January 2006. was going on. I knew my body was the 176 Aranesp injections as of October 2012. Hurray!!!!! This was another blessing. temple of the Lord, and I had a responsibility Every morning I dissolve the Exjade to take care of it. This is when my denial During a routine wellness tablets in water and drink it. I’ve been on shifted to a positive attitude. I started by Exjade ever since except for 6 months reading everything I could, looking up on check, I was diagnosed when the Ferritin level went low enough the internet, talking to my doctor, and with anemia. I was a very (312) for me to come off. The dosages attending the MDS patient forums put on active outdoor person and have varied over the last 7 years. I am by the MDS Foundation. In fact, I continue currently taking 1,000 mg a day. to try to attend one or two a year. These did not feel there was In September 2004, Dr. Alan List of the forums have been very educational; we anything wrong with me, Moffitt Cancer Research Center stopped hear from doctors and nurses in the field, the Procrit injections so my system would and from patients who share their so I did nothing about it. be clean to start the CC5013 (Revlimid) experiences, ask and discuss questions.
24 I have also done several videos for the MDS FOUNDATION drug manufacturer of Exjade. This involve- ment has caused me to realize how much I Stay Connected... appreciate what was taking place to find better ways to deal with iron overload. FOLLOW US ON: I joined the “National MDS Registry” in June 2008. This is a registry that collects detailed information on MDS patients nationwide. Their goal is to help MDS patients by determining what the GET INVOLVED! similarities and differences are in patients Join the MDSF Development Committee! (what works and what doesn’t work). The MDS Foundation is seeking members to join our Development Committee. Besides learning all I can about MDS Whether your contribution is time, skills, funds, or ideas you can make a difference! from multiple avenues and getting involved, For more information please contact Tracey Iraca at [email protected] or call I have also used my faith to pray for and 800.637.0839. encourage other patients. Each time I get out of my vehicle to enter the Oncology Center SUPPORT THE MDSF! or Infusion Center, I pray the Lord will put Please make a tax-deductible donation today. Kindly use the enclosed donation envelope someone in my path that He wants me to or go to www.mds-foundation.org to make your donation. speak to, encourage, or pray for. He honors this request each time. I also thank the Please think of the MDS Foundation in your holiday nurses who attend to me and if they need to giving this year and help people LIVING with MDS. pray, I pray with them. When I go to the THANK YOU FOR YOUR CONTINUED SUPPORT! blood bank, I introduce myself to the donors and thank them for keeping me alive. I believe this involvement is what is SIGN UP TO VOLUNTEER! keeping me going. My positive attitude and If you are interested in helping out in the MDS Foundation office or in attending events faith have been strengthened every day. as a representative of the MDSF, please call us at 800-MDS(637)-0839. To summarize, I would say, learn all you can about MDS, stay up to date on the research, stay positive, be motivated, and LIVING ENDOWMENTS get involved–especially in patient forums. Living Endowment Donations Have Been Made in Honor of: Ask questions of your doctor and nurses, and most of all keep God as your pilot. Edwin Goldberg Yes, it is true I have not been healed These donations were submitted by: Lucille B. Gerber, Marlton, NJ • Irwin and physically, but God has healed me Regina Friedman, Marlton, NJ • Edith Graczyk, Marlton, NJ • Arleen Cohen, spiritually, and my spirit is what will live on Marlton, NJ • Nelson and Barbara Weisberg, Marlton, NJ • David and Marilyn for eternity. I thank the MDS Foundation Staiman, Marlton, NJ • Patricia Shelfer, Marlton, NJ • Joyce Burnstein, Marlton, NJ Jerald and Jean Campenella, Marlton, NJ Mark and Doris Gendelman, for allowing me to share this time with you. • • Marlton, NJ E.M and N.R. Debs, Marlton, NJ Fred and Shelly Weiner, Marlton, May God bless you now and forever. • • NJ • Toby Necky, Marlton, NJ • Leonard and Rona Egan, Marlton, NJ • Marcello and Celestine DiPietro, Marlton, NJ I started byby readingreading Tom Julien, Sr. everything II could,could, This donation was submitted by: Mary E. Julien, Charlotte Hall, MD looking upup onon thethe internet, Judy DeWeese internet, talking to my talking to my doctor, and These donations were submitted by: Steve Visser • Mauzé Construction Corp., doctor, and attending the San Antonio, TX • National Association of Women, San Antonio, TX • Marsha attending the MDS patient MDS patient forums put L. Dunn, San Antonio, TX • Linda B. Shapiro, San Antonio, TX • Dawn forums put on by the Holmes, San Antonio, TX • Gerald and Gretel Lott, N. Las Vegas, NV • Martha on by the MDS Carolyn Simpson and Donald Ridall, San Antonio, TX Foundation.MDS Foundation.
25 FAMILY STORIES
Baking for MDS We’ve been lucky in that they caught knowledge and awareness of MDS is being this early. For now, she has declined the delivered to many via cupcakes and Audrie Lawless stem cell study and chemotherapy she was cookies, and that with every milestone and Babycakes Project offered for fear of it making her sicker. She person we encounter we are supporting My mother is the most beautiful woman fights on each day, she smiles, she laughs those fighting MDS, and taking one step in the world (maybe I am biased)… There and she makes sure that everyone is taken closer to finding a cure for this disease! are plenty of things in this world to support care of. This started to drive me crazy! I that statement, however. She’s the type of felt helpless. She didn’t need anything, woman that goes a thousand miles beyond didn’t want sympathy, and didn’t need ‘out of the way’ to help people – whether help – just love (typical Mom). it’s caring for her sick Dad, working one of After much thought, and realizing at her two jobs, tending to my brothers and I, this point there is nothing I can do for her or simply being there for a friend or a good other than support her, I mixed my inner laugh. She does everything with grace and need to do something with my talent of never expects anything but love in return. baking and whipped up something It’s been two years since my mother was delicious. February 5, 2013, was the diagnosed as having MDS. The first few official ‘launch’ of my Babycake’s Project. months were devastating. I watched as she What I do is bake delicious and adorable scrambled around trying to find doctors treats, sell them, take only what I used in and second opinions. I tried to assist in supplies, and donate the rest to MDS finding options for help if she needed to go Foundation. In the first month, I did a very into treatment and couldn’t continue soft and quiet launch. I kept it very small working. Watched as close friends and because I can only handle so many orders family offered to help with my little at a time as I do have a full time job too. To brother, finances, doctor’s appointments, date, I’ve had 9 orders, as well as holding a and anything else she could possibly need. bake sale at my job. I was amazed, excited, This strong, brave woman that never asked grateful and so optimistic that the first for help from anyone had to accept that she month went this well. I only have good may, in fact, need to rely on someone else vibes about what the future holds (for my for nearly everything. Having one son in Momma and the baking)! the military, one only ten years old, and I hope that in reading this you find me, she was still trying to make it seem like strength and inspiration. Know that the everything was and would be just fine. So far, she’s been doing alright. She has days where she barely makes it through the day without feeling entirely defeated – but she still fights on.
IKnow started that by the reading knowledge andeverything awareness I could, of MDS is beinglooking delivered up on the to many via internet, talking to my cupcakes and cookies, and doctor, and attending the that with every milestone MDS patient forums put onand by person the MDS we encounter Foundation.we are supporting those fighting MDS...
26 FAMILY STORIES
A Spouse’s Story I am not here to tell his story but that’s what I find I am doing. MDS has consumed Janet Pearson so much of me. How has it affected me? I My husband William has MDS. work, I worry. Fear sometimes consumes The initial diagnosis was 10 years ago me. Fear of being alone, fear of what he has (the internet description and prognosis to go through, fear of the unknown. I know of MDS was more frightening than I cannot do anything about it. It is difficult hopeful). In 2002, William was in Poland to share this fear with others who do not for two weeks and on his return he saw understand MDS. You see, on the outside I his family doctor. The blood work from project a well put together woman. I appear that visit showed hemoglobin of 88 mg to be calm, but my insides are continually dL (8.8 g/dL). He was then referred to a racing. I have been told that I am a patient hematologist. and kind person, and I care so much. any of the drug trials that were currently in A bone marrow aspiration was done in place. This information was expressed to I feel that I have been compromised out January 2003. William’s hemoglobin at that us at one of our October meetings. The of fear. We used to walk for miles, chatting time was 81 mg/dL (8.1 g/dL). We spoke hematologist at that time talked about and laughing. Walking at a good pace, and with the hematologist about a bone marrow Cyclosporine being an option; however, it in all kinds of weather, be it sun, rain or transplant, but his age was a concern. would require approval from the snow. We would sit out on summer The doctor put William on a drug government for insurance coverage. evenings, but West Nile Virus has which maintained his hemoglobin counts, Treatment was approved and William precipitated a fear in us. Walking is now a and sustained our quality of life for about began the medication in January 2008. The slow to medium pace. Distance, depending 4½ years. side effects were frightening. on the day, may be very short. One Sunday Our lives carried on as if nothing was This was a very difficult time for me. I evening William initiated a walk, he said, threatening our longevity together. We would call home from work several times a “Let’s go down to the lake.” We walked for played golf together, vacationed, and day to check on him. If he didn’t answer 2 kilometers. It was a beautiful evening. socialized. William travelled to Europe on the phone, I would call my neighbor so that The following night however was different. business trips, and his life was visibly she could reassure me, and let me know Walking any distance was impossible, he unaltered. I was working, playing piano, that he was okay. Often times she would was sure it was from the walk the night painting, going to yoga and enjoying the find him asleep in his chair in the yard. He before; so you see I grab and hold on to daily activities that were a part of a was so pale that she would check to see if these impulsive and special moments. relaxing lifestyle. he was breathing. She would call his name In April of 2007, our lives were altered to stir him awake. Everyone noticed a How has it affected me? with a 4:00 am hospital visit. William’s difference in William. hemoglobin was 80 mg/dL, which meant When William had iron overload I Fear sometimes consumes another bone marrow aspiration, trans- spoke with a dietician and asked about diet me. Fear of being alone, fusions, and other diagnostic testing to and foods to avoid. Tea was recommended, check for a possible source of bleeding. and if eating red meat always have a glass fear of what he has to go Diagnostic tests proved normal. The of cab-sauvignon wine, not Merlot, not through, fear of the bone marrow confirmed MDS had evolved Shiraz, but cabernet sauvignon. When to a more critical level, a more aggressive Williams hemoglobin reached 140 (14.0) I unknown. I know I cannot treatment would be required. Transfusions thought of phlebotomy and shared this do anything about it... continued every two weeks. An appoint- with him and the hematologist. He had ment was arranged at a major cancer centre three phlebotomy sessions to help remove You see, on the outside in September of 2007. This initial the excess iron. I also believe in the I project a well put appointment required another bone marrow importance of getting out for maybe (3) test, and weekly appointments which were 10 minute walks a day–keep moving. together woman. I appear then followed by biweekly appointments. When his creatinine started creeping up, to be calm, but my insides These bone marrow results confirmed that drinking more water was important. I still this type of MDS did not fit the criteria for bug him about drinking water. are continually racing...
27 FAMILY STORIES
Last year in September, (this is usually things like cooking together, shopping, short when we vacation), we did not travel. walks, and whatever vacation time we have. With the fears, frustration William had an old sports injury that flared My job is in the Intensive Care unit in and uncertainty, it is up and restricted his mobility. Therefore, an administrative position. Due to the fact important to take care of rest, ice and heat were in order. During that that this is a high risk floor in the hospital, time I started walking with my neighbor I feel the daily stresses that encompass the yourself as a caregiver. from 7–8 am Monday to Friday for 3 patients and their families also contribute Take time for yourself. weeks, it felt great. We are still walking on to my fears. the days that I have off from work. This is With the fears, frustration and I like to read, have my time. uncertainty, it is important to take care of lunches with friends, knit, I have written letters to William yourself as a caregiver. Take time for regarding my fears and my frustration, but yourself. I like to read, have lunches with walk and have started have never shared them with him. friends, knit, walk and have started a quilt. a quilt. I love my life with William; I grab the I will be starting a yoga class in November moments that we share together. The little with a friend.
FAMILY STORY: RAISING AWARENESS Bar Mitzvah Project Raises Awareness of MDS
Sheryl Billman, Plano, TX As part of his bar mitzvah project, our son Joshua hosted a fundraiser walk on October 6th, 2013. Thirty of our closest friends turned out on a beautiful fall day for this event. The purpose of this project was to raise awareness of MDS and to honor the memory of his grandfather, Bill Weisberger (my father) who died May 4th of this year secondary to complications resulting from MDS.
28 MDS FUNDRAISING EVENTS
WORKING TOGETHER FOR MDS
Corks for a Cause – web searches I came to the MDS Foundation and questions I did not know I A Fundraiser to Benefit had were answered. And, I continue to go the MDS Foundation back for additional information. When the San Antonio, Texas Chapter Judy DeWeese of NAWIC asked if they could sponsor a San Antonio, Texas fundraiser in my honor, my first thought for 35 years ago I joined the National the beneficiary was the Foundation from Association of Women in Construction whom I have gained so much knowledge. (NAWIC) and I had the honor of serving as On August 23rd the NAWIC Chapter national president in 2011–2012. NAWIC sponsored Corks for a Cause; a wine taster is a national association with approximately and Dr. Sridhar Beeram. Because of the with all the profits to benefit the MDS 140 chapters throughout the US and early diagnosis and the excellent care from Foundation. We had 25–30 in attendance international affiliates in several other Dr. Beeram and the CCST team, my and raised $1,000 ($750 was raised that countries. Our mission is to assist women schedule was hardly limited. (I did cancel evening and an additional $250 was made in establishing and advancing their careers two pre-planned trips that came early in the as a direct donation at MDS-foundation.org). in all areas of construction. chemo treatment. I was too uncomfortable I know that our donation will be put to In April 2012 (midway through my being in crowds at that stage.) good use and it will help benefit others term as NAWIC President) I was diagnosed I made the decision to be very open through research in MDS. Thank you to the with Myelodysplastic Syndrome (MDS). about MDS and my treatment. Perhaps I staff at MDS Foundation for all you do for Misshapen blood cells were found on can help someone else who faces this path physicians, patients, and caregivers. routine blood work and I was immediately as a patient or a caregiver. When I was For information about NAWIC contact referred to the Cancer Care Centers of diagnosed, I had never heard of Myelo- nawic.org. For information about MDS contact South Texas (an MDS Center of Excellence) dysplastic Syndromes. Through several www.MDS-foundation.org. 6 Years of Golf Tournaments Raise More Than $22,000
A special thank you to Paul Wenzel who held his 6th Annual Golf Tournament in memory of his beloved mother, Karen A. Wenzel, who passed away on June 19, 2006. This year’s event took place at the Kingston Fairways in Kingston, New Hampshire. The event included a 4-person scramble, BBQ and awards reception. All proceeds raised were donated to the MDS Foundation. THANK YOU so much Paul – and well done!
For years to come we will continue to keep my mother’s memory in our hearts and minds, and continue to support the MDS Foundation!
Paul Wenzel
29 INTERNATIONAL MDS FOUNDATION NURSE LEADERSHIP BOARD
Erik Aerts, RN Initiated in 2011, the MDS Foundation Foundation educational materials into Zürich, Switzerland International Nurse Leadership Board multiple languages. This year alone board Louise Arnold, RN (MDSF-NLB) continues to expand and membership has expanded to include Leeds, United Kingdom provide an international nursing forum for additional members in Australia, Germany Michelle Balla, RN, BSN Chicago, Illinois, United States the development of patient, caregiver and and the USA; and new members in Angelika Bitter nursing focused initiatives that promote Singapore and Japan. Study Coordinator/Nurse, Dresden, Germany excellence in the comprehensive care of Claudia Boglione, RN the patient with bone marrow disorders. Florence, Italy Members of the MDSF-NLB are invited to Núria Borràs, RN Barcelona, Spain participate based on demonstrated The single most influential component excellence in nursing practice and research Karen Campbell, RN of my professional career has been the Edinburgh, Scotland, United Kingdom related to patients with bone marrow Debbie Carr, RN, Ba OH&S disorders, including MDS. The MDSF- opportunity to serve and be an active part Newcastle, Australia NLB represents various regions and of the NLB. Through the collaboration Hwang Chung Cheng, RN, MN Singapore practice settings throughout the world. with my fellow NLB members I’ve Nicole Crisp, RN, BScN, MN, NP-adult mentored and written an MDS article Edmonton, Alberta, Canada Erin Demakos, RN, CCRN in a peer reviewed journal, and been New York, New York, United States Being a member of the NLB has been an involved in international efforts to Rebecca Dring, RN Melbourne, Australia enlightening process, sharing with other increase knowledge of other nurses and Corien Eeltink, RN, MA ANP patients! My favorite part of being an Amsterdam, The Netherlands professionals our joint experiences and Lenn Fechter, RN knowledge has, I hope, led to an even NLB member is leading the patient Stanford, California, United States greater depth which in turn can be forums around the country and Catherine Grima, RN Victoria, Australia passed on to my patients. The MDS playing a small part in a patient/family Janet Hayden, RN, BSc(hons), MPH journey with MDS. It is quite an honor London, United Kingdom patient/cancer experience can be scary to bring helpful, accurate information Miki Iizuka, RN and very daunting and I hope as much Kanagawa, Japan as we can to alleviate such worries. to this wonderful group of people. Christiane Kahle Lead Study Coordinator/Nurse, Dresden, Germany Natalie Singer Jean Ridgeway Emily A. Knight, RN, BSN, OCN To date this remarkable group has Scottsdale, Arizona, United States facilitated patient and caregiver forums in Sandra E. Kurtin, RN, MS, AOCN, ANP-C the United States and Europe; published a Tucson, Arizona, United States supplement in the Clinical Journal of It is my great pleasure working together Petra Lindroos Kolqvist, RN Goteborg, Sweden Oncology Nursing; completed an MDS with my colleagues in the NLB. It is Nurse Mentorship Program including Arno Mank, RN, PhD extremely important to present on the Amsterdam, The Netherlands facilitation and presentation at 6 regional ‘Challenges of MDS’ and to organize Cindy Murray RN, MN, NP-adult meetings; published a Mentorship Toronto, Ontario, Canada Monograph; held educational nursing study days where physicians and nurses Geke Ong, RN sessions in conjunction with the Oncology London, United Kingdom present on the latest developments and Nursing Society; developed and distributed Phyllis Paterson, RN, RSCN, Dip Onc trends in the treatment of adult and nursing educational slide modules Cambridge, United Kingdom paediatric patients with a Myelodys- Jean A. Ridgeway, MSN, APN, NP-C, AOCN specifically designed for Europe; Chicago, Illinois, United States developed an innovative interactive patient plastic syndrome. On October 11, 2013 Jayshree Shah, APN-C, AOCNP, RN, MSN, BSN, and caregiver resource available through we organised our first Patient Event in BS, CCRP, Hackensack, New Jersey, United States the MDS Foundation – Building Blocks of Natalie Singer, MSc, RN,BSc(Hons) Switzerland, which showed how Hope®; developed an interprofessional Glasgow, Scotland, United Kingdom important it is that patients and their Mary L. Thomas, RN, MS, AOCN educational program that includes live Palo Alto, California, United States roundtable meetings, webinars, and an relatives are regularly informed about Sara M. Tinsley, ARNP, AOCN online clinical toolbox–The MDS the new trends on MDS. Tampa, Florida, United States Academy; and translated and adapted MDS Erik Aerts
30 INFORMATION ON CLINICAL TRIALS
NATIONAL CANCER INSTITUTE TRIALS
New Research This search will provide you with all the To view listings of additional studies trials currently underway in MDS. You you can log onto www.clinicaltrials.gov. Protocol Listing may also sort by trials that only focus on For telephone support, call the National treatment or trials that only focus on Cancer Institute at: As we go to press the National Cancer supportive care. 1-800-4-CANCER Institute (NCI) has listed more than 100 clinical trials that focus on myelodysplastic syndromes. Full study information on Announcing A New Clinical Trial these trials is available at www.cancer.gov. This information includes basic study NAME OF INSTITUTION: information, study lead organizations, Novartis Pharmaceuticals study sites, and contact information. To TRIAL NUMBER: Currently Recruiting Participants. access the information: NCT00940602 The primary purpose of this study is to I Log on to www.cancer.gov Title of Trial or Description: prospectively assess the efficacy and safety I Click on “Search for Clinical Trials” Myelodysplastic Syndromes (MDS) Event of iron chelation therapy with deferasirox I Free Survival With Iron Chelation compared to placebo in patients with Click on “Type of Cancer” and type in Therapy Study (TELESTO) myelodysplastic syndromes (low/int-1 ‘myelodysplastic syndromes’ I A Multi-center, Randomized, Double- risk) and transfusional iron overload. Hit search blind, Placebo-controlled Clinical Trial Contact the Novartis Clinical Trials Access of Deferasirox in Patients With Myelo- Hotline at 800-340-6843 or go to www.clinicaltrials.gov dysplastic Syndromes (Low/Int-1 Risk) www.clinicaltrials.gov for additional for additional information. and Transfusional Iron Overload. information and to view the active sites.
Medical Education: Diagnosis and Prognostication of MDS REGISTER • Real-time scoring We would like to involve you Direct interactive expert feedback in to the diagnostic work-up • process and make you familiar Dozens of interactive cases with the interpretation of the • results and discuss the variety of clinical, laboratory, • Expert lectures morphologic and cytogenetic factors in!uencing or re!ecting Free Access (after registration) individual prognosis of MDS. www.MDSDIAGNOSIS.COM
COURSES LECTURES SCIENTIFIC COMMITTEE In-depth training on speci"c Learn about the basics and speci"cs of Provided by global leading MDS experts: scoring techniques. each relevant MDS biomarker scoring Dr. Ulrich Germing technique by viewing Dr. John Bennett Patient pro"le based our 15 minute Dr. Detlef Haase training covering the expert lectures. diagnostic value of each Dr. Arjan van de Loosdrecht additional technique Dr. Raphael Itzykson to an individual case. Dr. Leonie Saft Dr. Fransesc Sole
31 MDS CENTERS OF EXCELLENCE
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: I I An established university (or equivalent) program Board–approved clinical trials I I Recognized morphologic expertise in MDS Documentation of peer-reviewed I Available cytogenetics and/or molecular genetics publications in the field I Ongoing research, including Institutional Review 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 University of South Florida MASSACHUSETTS NEW YORK H. Lee Moffitt Cancer Center ARIZONA Children’s Hospital Boston Albert Einstein College of Medicine Tampa, Florida Boston, Massachusetts Cancer Center Mayo Clinic Hospital Alan F. List, MD Inga Hofmann, MD Bronx, New York Scottsdale, Arizona GEORGIA Amit Verma, MD Raoul Tibes, MD, PhD Dana-Farber Cancer Institute Emory Winship Cancer Institute Boston, Massachusetts Columbia University Medical Center The University of Arizona Cancer Center Emory University Richard M. Stone, MD New York, New York Tucson, Arizona School of Medicine David P. Steensma, MD Azra Raza, MD Ravi Krishnadasan, MD, FACP Atlanta, Georgia Tufts University School of Medicine Memorial Sloan-Kettering Cancer Center CALIFORNIA Amelia Langston, MD Tufts Medical Center New York, New York Virginia M. Klimek, MD Cedars-Sinai Medical Center The Blood and Marrow Transplant Boston, Massachusetts UCLA School of Medicine Program at Northside Hospital Kellie Sprague, MD Monter Cancer Center/ Los Angeles, California Atlanta, Georgia MICHIGAN NSLIJ Cancer Institute H. Phillip Koeffler, MD Asad Bashey, MD Lake Success, New York Barbara Ann Karmanos Steven L. Allen, MD City of Hope National Medical Center ILLINOIS Cancer Institute Icahn School of Medicine at Mount Sinai Duarte, California Wayne State University Loyola University Chicago New York, New York Stephen J. Forman, MD Detroit, Michigan Cardinal Bernardin Cancer Center Lewis R. Silverman, MD Moores Cancer Center at the Maywood, Illinois Charles A. Schiffer, MD New York Medical College/ University of California, San Diego Scott E. Smith, MD, PhD William Beaumont Hospital Rafael Bejar, MD, PhD Westchester Medical Center Robert H. Lurie Comprehensive Cancer Center Peter Curtin, MD Zalmen A. Arlin Cancer Center Cancer Center of Royal Oak, Michigan Valhalla, New York Stanford University Medical Center Northwestern University Ishmael Jaiyesimi, DO Karen Seiter, MD Stanford, California Feinberg School of Medicine MINNESOTA Roswell Park Cancer Center Peter L. Greenberg, MD Chicago, Illinois Buffalo, New York Olga Frankfurt, MD Mayo Clinic UCLA Center for Health Sciences Rochester, Minnesota James E. Thompson, MD Los Angeles, California Rush University Medical Center Mark R. Litzow, MD University of Rochester Medical Center Gary J. Schiller, MD Chicago, Illinois University of Minnesota Rochester, New York University of Southern California Jamile Shammo, MD Jane L. Liesveld, MD Medical Center, Fairview University Keck School of Medicine University of Chicago of Minnesota Medical School Weill Medical College Los Angeles, California Medical Center Minneapolis, Minnesota of Cornell University Casey L. O’Connell, MD Chicago, Illinois Erica D. Warlick, MD New York Presbyterian Hospital Richard A. Larson, MD FLORIDA MISSOURI New York, New York INDIANA Eric J. Feldman, MD All Children’s Hospital Washington University NORTH CAROLINA St. Petersburg, Florida Indiana University School of Medicine Gregory Hale, MD Simon Cancer Center Siteman Cancer Center Duke University Medical Center Mayo Clinic Indianapolis, Indiana St. Louis, Missouri Durham, North Carolina Jacksonville, Florida Larry Cripe, MD John F. DiPersio, MD, PhD Carlos M. deCastro, MD Hamid Sayar, MD, MS James M. Foran, MD NEBRASKA Wake Forest University Alvaro Moreno-Aspitia, MD MARYLAND School of Medicine University of Nebraska Medical Center Comprehensive Cancer Center Sylvester Comprehensive Cancer Center Johns Hopkins University Omaha, Nebraska Winston-Salem, North Carolina University of Miami School of Medicine Lori Maness, MD Bayard L. Powell, MD Miller School of Medicine Baltimore, Maryland Miami, Florida Amy Elizabeth DeZern, MD NEW JERSEY OHIO Stephen D. Nimer, MD University of Maryland The Cancer Center of Hackensack Cleveland Clinic Foundation University of Florida Shands Hospital Greenebaum Cancer Center University Medical Center Taussig Cancer Center Gainesville, Florida Baltimore, Maryland Hackensack, New Jersey Cleveland, Ohio Christopher R. Cogle, MD Maria R. Baer, MD Stuart Goldberg, MD Jaroslaw Maciejewski, MD, PhD
32 The Ohio State Comprehensive OUTSIDE THE CANADA Centre Hospitalier Cancer Center, James Cancer Hospital UNITED STATES Princess Margaret Hospital Universitaire (CHU) de Nancy and Solove Research Institute Nancy, France ARGENTINA Toronto, Ontario, Canada Columbus, Ohio Karen Yee, MD Agnés Guerci-Bresler, MD, PhD Alison R. Walker, MD Sanatorio Sagrado del Corazón Toronto Sunnybrook Centre Hospitalier Universitaire Buenos Aires, Argentina PENNSYLVANIA Regional Cancer Centre (CHU) de Tours Höpital Bretonneau Marcelo Iastrebner, MD Toronto, Ontario, Canada Tours, France The Western Pennsylvania Cancer Institute Emmanuel Gyan, MD, PhD Pittsburgh, Pennsylvania ARMENIA Richard A. Wells, MD Hôpital Avicenne/University Paris XIII James M. Rossetti, DO Muratsan University Hospital University of Toronto Bobigny, France Complex of Yerevan Hospital for Sick Children Thomas Jefferson University Thorsten Braun, MD/Claude Gardin, MD Kimmel Cancer Center State Medical University Toronto, Ontario, Canada Hôpital Cochin/University Paris V Philadelphia, Pennsylvania Yerevan, Armenia Yigal Dror, MD Paris, France Emmanuel C. Besa, MD Gevorg Tamamyan, MD CHINA Francois Dreyfus, MD AUSTRALIA University of Pennsylvania Cancer Center Institute of Hematology Hôpital Saint Louis/University Paris VII Philadelphia, Pennsylvania and Blood Diseases Hospital Peter MacCallum Cancer Institute Paris, France Selina Luger, MD University of Melbourne Chinese Academy of Medical Sciences Pierre Fenaux, MD, PhD TENNESSEE East Melbourne, Australia Tianjin, China Christine Chomienne, MD, PhD John F. Seymour, MD Zhijian Xiao, MD Vanderbilt University Medical Center Hôpital Saint Vincent de Paul The Sixth Hospital Affliated to Nashville, Tennessee University of Tasmania Université Catholique de Lille Shanghai Jiaotong University Madan Jagasia, MD Royal Hobart Hospital Lille, France Shanghai, China Stephen Strickland, MD Hobart, Tasmania, Australia Christian Rose, MD Raymond M. Lowenthal, MD Xiao Li, MD, PhD TEXAS Institut Paoli-Calmettes AUSTRIA CZECH REPUBLIC Cancer Care Centers of South Texas Marseille, France San Antonio, Texas University Hospital of Innsbruck Institute of Hematology Norbert Vey, MD Roger Lyons, MD Innsbruck, Austria & Blood Transfusion Service des Maladies du Sang Reinhard Stauder, MD Prague, Czech Republic Hôpital Claude Huriez Southwest Regional Cancer Center Jaroslav Cermák, MD, PhD Lille, France Medical University of Vienna Austin, Texas Bruno Quesnel, MD Richard Helmer, III, MD Vienna, Austria DENMARK GERMANY University of Texas Peter Valent, MD Odense University Hospital MD Anderson Cancer Center BELGIUM The University of Southern Denmark Georg-August-Universität Göttingen Houston, Texas Odense, Denmark AZ Sint-Jan AV Göttingen, Germany Guillermo Garcia-Manero, MD Gitte Birk Kerndrup, MD Detlef Haase, MD, PhD Brugge, Belgium Hagop Kantarjian, MD Dominik Selleslag, MD Rigshospitalet National Hannover Medical School WASHINGTON University Hospital Medizinische Hochschule Hannover University Hospital Leuven Copenhagen, Denmark Hannover, Germany Fred Hutchinson Cancer Research Center Leuven, Belgium Lars Kjeldsen, MD, PhD Arnold Ganser, MD University of Washington Michel Delforge, MD, PhD University of Århus Seattle Cancer Care Alliance BRAZIL Heinrich-Heine Universität Düsseldorf Seattle, Washington The University Hospital University Hospital Joachim Deeg, MD/Elihu Estey, MD AC Camargo Hospital– Århus, Denmark Düsseldorf, Germany Cancer Center Mette Skov Holm, MD, PhD WASHINGTON, DC Ulrich Germing, MD São Paulo, Brazil FRANCE Johann Wolfgang Goethe Universität Georgetown University Hospital Luiz Fernando Lopes, MD, PhD Frankfurt Main, Germany Lombardi Comprehensive Cancer Center Centre Henri Becquerel Hemocentro da UNICAMP Rouen University School of Medicine Gesine Bug, MD Washington, D.C. University of Campinas Rouen, France Klinikum Rechts der Isar Catherine Broome, MD Campinas, Brazil Aspasia Stamatoullas, MD Technical University of Munich George Washington University Irene Lorand-Metze, MD Centre Hospitalier Universitaire Munich, Germany VA Medical Center Hospital das clínicas (CHU) de Angers Service Katharina Götze, MD Washington, D.C. da Faculdade de Medicina des Maladies du Sang Charles S. Hesdorffer, MD MLL Münchner Leukämielabor da Universidade de São Paulo Angers, France Munich, Germany WISCONSIN São Paulo, Brazil Norbert Ifrah, MD Torsten Haferlach, MD Elvira D. Rodrigues Pereira Velloso, Medical College of Wisconsin Centre Hospitalier Universitaire St. Johannes Hospital MD, PhD Bone Marrow Transplant Program (CHU) de Grenoble Heinrich-Heine Universität Milwaukee, Wisconsin Universidade Federal de Ceará Grenoble, France Duisburg, Germany Parameswaran Hari, MD Ceará, Brazil Jean-Yves Cahn, MD Carlo Aul, MD, PhD University of Wisconsin Silvia Maria M. Magalhães, MD, PhD Centre Hospitalier Universitaire University of Heidelberg Medical Center, Madison Medical School Universidade Federal de São Paulo (CHU) de Limoges Hôpital Dupuytren St. Lukas Klinik Solingen Madison, Wisconsin São Paulo, Brazil Limoges, France Solingen, Germany Mark B. Juckett, MD Maria de Lourdes Chauffaille, MD, PhD Dominique Bordessoule, MD Ulrich Mahlknecht, MD, PhD
33 Albert-Ludwigs-Universität ISRAEL THE NETHERLANDS TAIWAN Freiburg Tel-Aviv Sourasky Medical Center Radboud University Nijmegen Medical Centre National Taiwan University Hospital Freiburg, Germany Tel-Aviv, Israel Nijmegen Centre of Molecular Life Sciences Taipei, Taiwan Michael Lübbert, MD, PhD Moshe Mittelman, MD Nijmegen, The Netherlands Hwei-Fang Tien, MD, PhD Universität Hamburg Chaim Sheba Medical Center G.A. Huls, MD THAILAND Hamburg, Germany Vrije Universiteit Medical Center Tel Hashomer, Israel King Chulalongkorn Memorial Hospital Nicolaus Kröger, MD, PhD Amsterdam, The Netherlands Drorit Grizim Merkel, MD Pathumwan, Bangkok, Thailand Gert J. Ossenkoppele, MD, PhD Universitätsklinikum ITALY Tanin Intragumtornchai, MD Carl Gustav Carus PERU Centro di Riferimento TUNISIA Dresden, Germany Oncologico di Basilicata (CROB) Instituto Nacional de Enfermedades neoplasicas Hospital Aziza Othmana Uwe Platzbecker, MD Lima, Peru Rionero in Vulture (PZ), Italy Tunis, Tunisia University Children’s Hospital Carlos E. Vigil-Gonzales, MD Pellegrino Musto, MD Balkis Meddeb, MD Freiburg, Germany Istituto di Ematologia POLAND Charlotte Niemeyer, MD TURKEY Universita’ Cattolica Sacro Cuore Jagiellonian University Collegium Medicum University of Cologne Ankara University Roma, Italy Kraków, Poland Cologne, Germany School of Medicine Hospital Giuseppe Leone, MD Aleksander Skotnicki, MD, PhD Karl-Anton Kreuzer, MD Maria Teresa Voso, MD Ankara, Turkey PORTUGAL Osman Ilhan, MD Universitätsklinikum University of Florence Benjamin Franklin Azienda OSP Careggi Hospital de Santa Maria UKRAINE Lisbon, Portugal Berlin, Germany Florence, Italy Research Center for Joao F. Lacerda, MD University Hospital Valeria Santini, MD Radiation Medicine Mannheim University of Pavia School of SAUDI ARABIA Kiev, Ukraine Mannheim, Germany Medicine, Fondazione IRCCS King Faisal Specialist Hospital & Research Centre Dimitry Bazyka, MD Wolf-Karsten Hofmann, MD Policlinico San Matteo Riyadh, Saudi Arabia UNITED KINGDOM GREECE Pavia, Italy Mahmoud Deeb Aljurf, MD Mario Cazzola, MD Aberdeen Royal Infirmary King Khaled University Hospital G. Papanikolaou General Aberdeen University School of Medicine JAPAN King Saud University Hospital of Thessaloniki Riyadh, Saudi Arabia Foresterhill, Aberdeen, Scotland Kyoto University Hospital University of Thessaloniki Ak Almomen, MD Dominic Culligan, MD Thessaloniki, Greece Kyoto, Japan SINGAPORE Addenbrooke’s Hospital Charikleia Kelaidi, MD Akifumi Takaori, MD Cambridge University Hospitals Patras University Hospital Metropolitan Research Center Singapore General Hospital NHS Foundation Trust Patras, Greece for Blood Disorders Singapore Cambridge, United Kingdom Argiris Symeonidis, MD Shin-Yurigaoka General Hospital Aloysius Ho, MD Alan J. Warren, PhD, FRCP, FRCPath Kanagawa, Japan University of Athens SOUTH AFRICA Christie NHS Foundation Trust Kiyoyuki Ogata, MD, FACP Laikon Hospital University of Cape Town Manchester, United Kingdom Nagasaki University Hospital Athens, Greece Groote Schuur Hospital Mike Dennis, MD School of Medicine Nora Viniou, MD Cape Town, South Africa King’s College London & Atomic Bomb Disease Institute Nicolas Novitzky, MD, PhD King’s College Hospital University General Nagasaki City, Japan London, United Kingdom Hospital Attikon Masao Tomonaga, MD SPAIN Athens, Greece Ghulam J. Mufti, DM, FRCP, FRCPath Saitama International Hospital Universitario de Salamanca Vassiliki Pappa, MD Queen Elizabeth Hospital Medical Center Salamanca, Spain University Hospital Birmingham HUNGARY Saitama Medical University Consuelo del Cañizo, MD, PhD NHS Trust Hidaka, Saitama, Japan Hospital Universitario La Fe Semmelweis University Birmingham, United Kingdom Akira Matsuda, MD Valencia, Spain School of Medicine Charles Craddock, MD Tokyo Medical College Miguel A. Sanz, MD, PhD Budapest, Hungary Radcliffe Hospitals and Tokyo, Japan Hospital Universitario Vall d’Hebron Judit Várkonyi, MD, PhD University of Oxford Kazuma Ohyashiki, MD, PhD Laboratorio del Citologia-Citogénetica INDIA Oxford, United Kingdom Barcelona, Spain KOREA Paresh Vyas, MD Tata Medical Centre Maria Teresa Vallespi-Sole, MD, PhD Kolkata, India Catholic Blood and Marrow SWEDEN Royal Bournemouth Hospital Col (Dr.) Deepak Kumar Mishra, MD Transplantation Center Bournemouth, United Kingdom Karolinska Institute at Sally Killick, MD Tata Memorial Hospital The Catholic University of Korea Seoul, Korea Karolinska University Hospital Huddinge St. James’s University Hospital Mumbai, India Stockholm, Sweden Yoo-Jin Kim, MD St. James’s Institute of Oncology Purvish Parikh, MD Eva Hellström-Lindberg, MD, PhD Seoul National University Hospital Leeds, United Kingdom IRELAND SWITZERLAND Seoul National University David T. Bowen, MD Adelaide and Meath Hospital College of Medicine University Hospital Zurich University Hospital of Wales Dublin, Ireland Seoul, Korea Zurich, Switzerland Cardiff, Wales Helen Enright, MD Dong Soon Lee, MD, PhD Bernhard Gerber, MD Jonathan Kell, MD
34 We Will exhaust all possibilities.
We will…because patients are our priority.
Celgene Patient Support® provides free and personalized assistance with patients’ access and reimbursement needs. With continual communication and consistent follow-through, your dedicated Celgene Patient Support® Specialist will streamline access to Celgene products by helping you and your patients with: t Benefits investigation To Contact Celgene Patient Support®: t Prior authorization Call: 1-800-931-8691 t Appeal support E-mail: [email protected] t Medicare Fax: 1-800-822-2496 t Co-pay assistance Visit: www.CelgenePatientSupport.com – Celgene Commercial Co-pay Program – Co-pay assistance through third-party organizations Monday through Friday, 8:00 AM to 7:00 PM ET t Prescription status t Celgene free medication program t Celgene products and restricted distribution programs
4 out of 5 patients who requested assistance from Celgene Patient Support ® received their medication.
Celgene Patient Support® is a registered trademark of Celgene Corporation. © 2013 Celgene Corporation 09/13 US-CELG110059(1)
35
36 CLARITY TA TA hree-YYeareear MDS Observational Study
Clinical EvaluationEvaluation of Next GenerGenerationation Sequencing (NGS) for the Diagnosis and Management of MyMyelodysplasticelodysplastic Syndrome (MDS)
Genoptix is researching the role of a number of gene mutations in patients with MDS using an Investigational Clinical suspicion TTest.est. This clinical study is an evidence-driven approach of MDS that aims to improve phv ysicians’ abilities to diagnose and manage patients more effecti .elyv
Study Requirements: MDS EvaluationEvaluation Clinical suspicion of MDS AAvvailableailable bone marro for Invw estigational TTestest and additionaladditio central laboratory diagnostic evaluation PPatientsatients would not be eligible if they vha e a current diagnosis of **VUÄYTLKKLTYÄUV* EquivocalocalvEqui ocal hematopoietic malignancy No evidence diagnosis of evidence of of MDS Note: Concomitant patient enrollment in other MDS MDS studies is permitted.
Subject enrolled: Physicians – you could be an Bone marromarroww and blood DNDNAA Sequencing vIn estigator if: YYourour site supportssuppor clinical trials YYourour site sees at least 2 suspected 3-y3-yearear follofollowupwup MDS patients per month
TToo learn mormore about this MDS studyy,, contact: [email protected]
37 CONTRIBUTIONS TO THE MDS FOUNDATION
GIFTS TO THE FOUNDATION
Birgit O’Connell, Toms River, NJ Anthony J. Orrick, Monroe Township, NJ John Papacosma, Harpswell, ME Miriam A. Pasqual, San Ramon, CA Thank You! Michelle Patterson, Abbot, ME The MDS Foundation relies entirely on gifts and membership fees to further its William Pearson, Hamilton, Ontario, Canada work. We would like to acknowledge the generosity of the following individuals and Deborah J. Peirce, Deerfield, IL organizations that have recently provided gifts to the Foundation: Ramiro Penaherrera, London, UK Ciara Poalillo, Totowa, NJ Daniel C. Albers, San Clemente, CA Jack E. Gower, Wilmington, DE Robert & Carol Pomeroy, Mt. Marion, NY Joe Artuso, Berwyn, PA Margaret Guyard, Jupiter, FL Joyce Printz, Sarasota, FL William Balderson, Hampton, VA Susan Hastings, Jonestown, PA Peter Rafferty, Flowood, MS Jackie Barr, Sunnyvale, TX Helen Havens, Napa, CA Dan and Andrea Reese, Cataula, GA Romolo Bernardi, Roma, Italy Darryl L. Hilton, College Park, GA Robert E. Retel, Wheaton, IL Michael and Janis Biro, Benicia, CA Sharon Horne, Oxford, MA Adrian Ricca, Weirton, WV Ina Block, Napa, CA Emilie Jackson, Carmi, IL Harold M. Rosenthal, MD, Houston, TX Clyde Bowie, Mechanicsville, VA Linda Janotha, Minneapolis, MN Alan and Teri Jo Shields, Salem, OR The Brooks Group and Associates, Inc., Barry Johnson, Dallas, TX Michele Schor West Chester, PA Melissa Johnson, Newark, OH Richard Schuler, Miami, FL Timothy M. Brown, Wayne, PA Mary E. Julien, Charlotte Hall, MD Arne & Gloria Schwartz Monica E. Carey, Glendale, NY Betty King, Fort Pierce, FL Woodland Hills, CA Abbie C. Carter, Philadelphia, PA Charlene M. Kilinski Sylvia C. Shapiro, North Woodmere, NY Donald and Mary Jane Cerullo Mary S. Kostalos, Pittsburgh, PA Patricia J. Shirley, Golden, CO Bonita Springs, FL Thomas M. Kubiak, Centennial, CO Ronald J. Skalsky, Canton, OH Wen-Jhy Chao, Denville, NJ Winifred Kryda, Walnut Creek, CA Claire-Elizabeth Sloan, Portland, OR Peter Cleaveland, San Carlos, CA Donald W. Kuhn, Gordonsville, VA Scott Slotterbeck, Sacramento, CA Sara J. Combes, Selkirk, NY Shari Kurita, Oakland, CA Linda Smith, Louisville, CO David Cotter, Kingsville, Ontario, Canada Rita LaBella, Orlando, FL Marlene Strohl, San Marcos, CA Linda Day Audrie Lawless, Tinley Park, IL James A. Tassie, Sr., Chandler, AZ Dr. Kathleen DeLorenzo, Maumelle, AR Kevin J. Lawlor, Warrington, PA Vincent Tassone, Bensenville, IL Amy E. DeSantis, Chesterfield, NJ Kleanor Burnam Lee, Bowling Green, Temple Beth El of Boca Raton Marilyn Dickstein, Boca Raton, FL KYFrederic Leverenz, Gilbert, AZ Boca Raton, FL Richard Doughty, Tuscaloosa, AL Frederic & Kathleen Leverenz Jessica Spitalnic Brockman, Rabbi and Marguerite DuFore, San Mateo, CA Franklin, WI Wendy Walin, Temple Beth El of Eisai Inc. PAC Charity Program, Carolyn M. Long, Anchorage, AK Boca Raton, Boca Raton, FL Public Affairs Support Services, Reston, VA M Ludwig Designs, Dover, NH Maureen L. Thebes Amanda Ellis, Oswestry, Shropshire, UK Sue-Ellen MacInnes, Eden, UT Pat Thompson, Philadelphia, PA Darcy A. Fabrizius Mr. & Mrs. Michael J. Maher, Summit, NJ D.O. Totty, Collierville, TN Mark Feeney, Indianapolis, IN Marjourie L. Mann, Washburn, MO Helen Valenti, San Jose, CA Ellen M. Ferrante, Worcester, MA Ambuja Manoharan, Fort Lee, NJ Ronald and Helen Vanskiver Ron Ferrara, Pasadena, CA Camilla L. Manzo, Vienna, WV Pullman, WV Peter Finiello, Jamaica, NY Sheila Martin, Fairfax, VA James Varnum, Midland, MI Jeffrey & Elizabeth Fisher, Warwick, NY Thomas and Barbara Mastandrea Pam Whitmore, Buckingham, IA Catherine Foster, Chino Valley, AZ Lincolnshire, IL Martina Wiedmayer, Collegeville, PA James Frye, Palestine, TX Grant McAllister, Marion, OH Page Wingfield, Goldsboro, NC Thomas Garringer, Peoria, AZ Lee McLamb, Four Oaks, NC Len Yool, Los Altos, CA Heinrich M. Gebhard, Sacramento, CA Stuart and Caryn Miller, Great Neck, NY Olly Young, Colorado Springs, CO Becky L. Goodwin, New Castle, DE Gary A. Mitchell, Lansing, MI Darice Zimmermann, Carol Ann Gould, Waltham, MA Wilbur Nemitz, Nisswa, MN Colorado Springs, CO
38 MEMORIAL FUNDS The MDS Foundation’s Work Helps Keep Memories Alive
The names listed here are those in whose honor the MDS Foundation received donations through 2013. These individuals are those whose lives have been affected by myelodysplastic syndromes, those fighting MDS now, and those we have lost. These donations keep the fight alive, for all of us. Thank you.
Memorial Funds Have Been Established in the Name of:
Mrs. Isadore Abrams • Ms. Beverly Adams • Mr. Donald R. “Don” Allison • Mrs. Linda Alves • Mr. James G. Anderson • Mrs. Emma M. Andrus • Mr. Richard Arnot • Mrs. Fran Baggerly • Mrs. Jane Bailey • Mrs. Love Pope Balkwill • Ms. Kayoko Balser • Mr. Vincent E. Banning• Mr. Lucian Barba • Mrs. Jan Barsel • Mrs. Loydene Beaubien • Mr. David Phillips Bingham • Mr. Wayne Vincent Black • Mr. Donald Allen Bartenslager • Mr. Donald Bridenstine • Mr. Edwin Ralph Braden • Ms. Jeanne Braam • Mrs. Britta B. Brown • Mr. Joshua Edward “Eddie” Brown • Mrs. Lottie Switlik Bruenn • Mr. Roy C. Carter • Mr. John B. “Jack” Cassidy • Mr. Ralph Cavallo, Sr. • Mrs. Sharron Helen Chandler • Mr. Larry Cohen’s daughter Pamela• Mrs. Patricia Marie Connery• Mr. Calvin Coran• Ms. Mary Jo Crawford• Mr. Peter A. Daly • Mr. Robert “Bob” D’Angelo • Mr. Jack L. Davis • Mrs. Rita Day Dempewolf • Mr. Harry Mac Fuss • Mr. Sidney Goldstein • Ms. Eileen Donnelly • Mr. Robert M. Drach, Sr. • Mr. Robert Dufore • Mr. Leo A. Ebel • Mr. Robert H. Eidd • Mr. Joseph J. Falcone • Mr. Charles J. Fabyanski • Mr. Fred D. Faraoni • Mr. Jesse William Finander • Mrs. Carmella Finocchio• Mr. Salvatore Firetti• Mr. Robert Forest• Mr. Sam Friedman• Ms. Elaine Frye • Ms. Rosalie Garofalo • Mr. Harvey Allan Garner • Mrs. Bette Jean Gates • Mr. Sidney Goldstein • Mr. Philip L. Gore • Mrs. Judy Grey • Dr. Randi Helsel • Mr. Edmund Harrison Sallee • Mr. Seymour I. Hershman • Mr. Roy H. Hilton • Mr. Robert “Bob” Hoffman • Mr. Saul Hoffman • Mr. Richard Hughes • Ms. Hope (Esperanza) Irizar • Mr. George Iuzzolino • Mr. Thomas “Tom” Howard Jacob • Mrs. Elsie Ernestine Jolivette • Mr. Norman Jones • Mrs. Shirley Marie Kahan • Ms. Kate Karam • Mrs. Charlotte Maskell Keegan • Mr. Joseph F. Kenney, Sr. • Mrs. Merle Koerner’s mother • Mr. John Kostalos, Jr. • Mrs. Barbara Joan Ladyman• Mr. Jack Eugene Ledingham• Mr. David F. Lee• Mr. Eddie Leitman • Dr. Grace Yu-Sheng Lo • Mr. Norman LoPresti • Mr. Willie W. Lucas • Dr. Sol Luft • Mrs. Doris M. Magiera • Mrs. Patricia J. Marsh • Mrs. Antoinette “Netty” (Esposito) Mason• Mr. Anthony Joseph Massone • Mr. James E. McCaffrey, III • Dr. Clara Adams McClellan• Ms. Leah McDermid • Mr. Edward McFarland, Sr.• Mr. William Francis McLaughlin • Mr. Richard Keith Meadows • Mr. Wayne Meling • Mrs. Mary L. Messana • Mrs. Bonnie Michel • Ms. Pauline Miille • Mr. Carl Morganstein’s mother • Mr. Lavere C. Munn • Mrs. Roseann Murer • Mr. John W. Myslinski • Mr. Edmund Nowicki, Jr. • Mrs. Arlene O’Donnell • Mr. Jerry Edward Oliver • Mr. Thomas O’Rourke • Mrs. Gisela E. Paniga • Mr. William Paul Parkhurst • Mrs. Catherine M. Pate • Mr. John T. Patela • Mrs. Elizabeth Percudani • Mr. Bruce Peskin • Mr. Irwin Peyser • Mr. Henry C. Pitts, Jr. • Mrs. Rosemary T. Poche • Mr. Robert F. Poehlman • Mr. James Edward “Jimmy” Porter, Sr. • Ms. Audelle “Mimi” Rainer • Mr. Ronald Rapchik • Mr. Stephen M. Redpath • Mr. Jon Reuscher • Mr. Carl Douglass Riegel • Mr. Kurt G. Rinne • Mr. Henry Rosenberg • Mrs. Mary A. “Mimi” Ryan • Ms. Bonnie L. Salter • Mr. William Sanderson • Mrs. Elaine M. Schimmoeller • Mr. Herbert Schulz • Mrs. Judith B. Shenkan • Mr. Jerry Sabino • Mr. Willem Smeets • Mr. William J. Spencer, II • Mr. Forrest David Sprague • Mr. Kenneth Sprecher • Mrs. Virginia R. Stephenson • Mrs. Constance V. Stuckey• Mr. Robert Henry Sullentrup • Mr. Loren Ernest Swanson • Mr. John Mason Lee Sweet • Mrs. Jennie Swiderski • Mrs. Bunny Tabak • Mr. Refugio “Rufus” Tafalla • Mrs. Ruth Teitelman • Mrs. Jeannette Toth • Ms. Julia Trebesiner • Ms. Adalgisa Vezzosi • Ms. Mary Ellen Ward • Mr. Edward L. Waterman • Ms. Julie Weber • Mr. Robert J. Weinberg• Mr. William Weisberger• Mr. Robert Whitehouse • Ms. Joyce A. Widmark • Mrs. Beverly Mae Wilder • Mrs. Joyce Ann Widmark • Mr. Dudley Otis Williams, Jr. • Mr. Leonard Dale Williams • Ms. Ola Williams • Mrs. Margaret Doris Yess
Honor or memorialize your loved one at: www.mds.foundation.org/donate or contact us at 800-MDS-0839 (within US), 609-298-1035 (Outside US).
39 MDS FOUNDATION INFORMATION
MDS FOUNDATION BOARD OF DIRECTORS
Peter L. Greenberg, MD OFFICERS Stanford University Roberta Smith, CPA the myelodysplastic syndromes foundation, inc. School of Medicine Treasurer Eva Hellström-Lindberg, Susan Hogan The MDS Foundation, Inc. MD, PhD 4573 South Broad Street Operating Director Karolinska University Suite 150 Hospital Huddinge Tracey Iraca Yardville, NJ 08620 Secretary Sandra E. Kurtin, RN, MS, 800-MDS(637)-0839 www.mds-foundation.org AOCN, ANP-C The University of Arizona Become a Member Stephen D. Nimer, MD Alan F. List, MD The MDS Foundation would like Chairman, MDS Foundation H. Lee Moffitt Cancer Center to have you as a member. Member- Sylvester Comprehensive Cancer Center & Research Institute University of Miami ship is $50 a year for physicians and Silvia M.M. Magalhães, MD, PhD Miller School of Medicine other professionals. Patients, their Federal University of Ceará families, and others interested in MDS John M. Bennett, MD Hospital Universitário may join at the reduced rate of $35. University of Rochester Walter Cantídio Membership benefits include a Medical Center Yasushi Miyazaki, MD special subscription rate of $135.00 Mario Cazzola, MD Nagasaki University for Leukemia Research (a substantial University of Pavia Ghulam J. Mufti, DM, FRCP, discount from the current institutional School of Medicine FRCPath subscription rate of $2,373), reduced Erin Demakos, RN, CCRN King’s College London professional registration fees at Icahn School of Medicine at Mount Sinai King’s College Hospital International Symposia, and issues of The MDS News. Theo J.M. de Witte, MD, PhD Charlotte M. Niemeyer, MD Radboud University University Children’s Hospital Please visit us at: Pierre Fenaux, MD, PhD Member Emeritus www.mds-foundation.org Hopital Saint Louis/University Paris VII Franz Schmalzl, MD
THANK YOU TO OUR SPONSORS FOR THEIR SUPPORT
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