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US Patient Liaison: Audrey Hassan • Patientliaison@mds-foundation.org • P.O. Box 353, Crosswicks, NJ 08515
Phone: 1-800-MDS-0839, outside the US only: 609-298-6746 • Fax: 1-609-298-0590
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EU Patient Liaison: Sophie WintrichSwintrich@mds-foundation.org
The Rayne Institute, Denmark Hill Campus, 123 Coldharbour Lane London SE5 9NU, UK Tel: +44 20 7733 7558

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The MDS Foundation is a multi disciplinary, international organization devoted to the prevention, treatment, and study of the myelodysplastic syndromes. The organization is based upon the premise that international cooperation will accelerate the process leading to the control and cure of these diseases.

Our Journey to Hope is brighter than ever as we enter the New Year. Please continue your support in 2008.

arrow Join the Journey to Hope!

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Saturday, June 7th, 2008: Fred Hutchinson Cancer Research Center,
Seattle, WA to Hold a Patient Conference on Marrow Failure

To register for this conference, call 410-867-0242.

Click here for meeting agenda arrow

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Virtual Microscopy in MDS-AML:
The Key to Enhancing Classification

This CME Accredited Program is now available!

Click here to view the program arrow

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Young Investigator Grants Announcement 2008
Deadline for Letters of Intent is June 16th

The Foundation is dedicated to furthering the research into MDS and invites young investigators (under 40 years of age) from institutions that form our MDS Centers of Excellence to submit their proposals for either basic research or clinical management into the causation, epidemiology, molecular biology, cytogenetics, morphology, prognosis and management of the Myelodysplastic Syndromes. The initial awards are set at $40,000 over 2 years [$20,000 in Year 1; $20,000 in Year 2]. Two awards will be announced this year for the years of 2009-2010. Subsequent awards will be announced for 2010 and beyond.

All MDS Centers of Excellence are invited to nominate one candidate from their institution. A mandatory brief letter of intent (L.O.I.) is to be submitted no later than June 16, 2008. The L.O.I. should contain a brief paragraph describing the background of the candidate and 1-2 paragraphs describing the proposed project and the name of the mentor. A formal application will be sent to you shortly after receipt of the L.O.I. and will be due no later than August 15, 2008.

The application deadline is August 15, 2008. Notification of the awards will occur by October 1, 2008 with activation on January 1, 2009.

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MDS Foundation Announces 2007 Recipients of
The Young Investigator’s Grant Fund for Fellows in Hematology

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(Pictured L to R) Robert J. Weinberg; Stephen Nimer, MD; Eva Hellström-Lindberg, MD, PhD; Klas Raaschou-Jensen, MD; Azim Mohamedali, PhD;
John Bennett, MD; Ghulam Mufti, MD; Kathy Heptinstall, BSN, RN

In December 2005 the Myelodysplastic Syndromes Foundation, Inc. initiated a series of grants for The Young Investigator’s Grant Fund for Fellows in Hematology from institutions that form the Myelodysplastic Syndromes (MDS) Centers of Excellence. Two awards will be granted annually.

This year’s recipients were honored at a reception on December 7th in conjunction with the American Society of Hematology’s annual meeting. The Grant Review Committee selected Klas Raaschou-Jensen of Copenhagen University Hospital in Denmark for his grant submission entitled “Identification and Characterization of the Genetic Background in a Unique Danish Family with Several Cases of Hypoplastic Myelodysplastic Syndrome” and Azim Mohamedali of Kings College London in the United Kingdom for his submission entitled “Prevalence and Pathogenetic Significance of Uniparental Disomy on Chromosome 4q in RARS.” As this year’s recipients, each was awarded a $40,000 grant for continued research.

The Foundation is dedicated to furthering the research into MDS and invites Young Investigators (under the age of 40) to submit either basic or clinical research proposals into the causation, epidemiology, molecular biology, cytogenetics, morphology, prognosis or management of the Myelodysplastic Syndromes.

The application deadline for 2008 grants is June 16, 2008. Notification of the awards will occur by October 1, 2008 with activation on January 1, 2009. These awards will provide $40,000 over a 24-month period from January 1, 2009 to December 31, 2010.

video Introduction by Stephen Nimer, MD
video Award recipient Azim Mohamedali, PhD
video Award recipient Klas Raaschou-Jensen, MD
video Conclusion by Stephen Nimer, MD

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Once-Daily Exjade® Shown to Remove Iron From the Heart, According to Data Presented at ASH

  • Approximately 78% of beta-thalassemia patients had decreases in cardiac iron and 90% had decreases in liver iron after six months, interim data show
  • Study in sickle cell disease (SCD) patients with iron overload showed continued safety and efficacy over two years
  • Safety and efficacy demonstrated in lower-risk myelodysplastic syndromes (MDS) patients

Click here for complete media release arrow

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Epigenetics: Playing the Genetic Score

Epigenetics is challenging long-held notions that our genes are our destiny and radically changing the way researchers think about the development of certain illnesses. As science come to understand the way epigenetic processes silence genes, it is given rise to promising new therapies for diseases such as MDS.

Watch The Journal of Life Sciences webcast arrow

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MDS Practice and Treatment Survey

The MDS Foundation recognizes that data on many aspects of MDS worldwide is sketchy or nonexistent. While individual investigators have developed databases to track MDS within their individual sites or working groups, that information is not located within one easily accessible database.

To assist in the development of useful information, The Foundation has recently initiated the first Patient Registry and data from the Foundation’s Centers of Excellence are currently being entered.

Since it will be some time before these data are mature and usable, The Foundation has attempted to design a survey that we hope will assist in describing some of the issues related to MDS worldwide as well as the treatments being utilized in this disease. A pilot of this survey has already been completed with some selected Centers of Excellence. While we know that this information is, in most instances, based on subjective criteria it can assist in identifying educational and research opportunities in the near term and until more accurate data is available.

The results of this expanded survey will be shared with each of our Centers of Excellence and used by the Foundation to assess new educational and research opportunities. Thank you in advance for your consideration in completing this form.

Click here to print survey arrow

Click here to complete online arrow

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BIO Commemorates the 25th Anniversary of the Orphan Drug Act

This landmark law helped lead to the development of new drugs and biologics for rare and frequently untreated diseases by granting seven years of market exclusivity to the developer of a new therapy for a disease which affects less than 200,000 people in the U.S.

Click here to read the complete news release arrow

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1st National Update on Myelodysplastic Syndromes
July 26-27, 2008 S.P. Jain Auditorium, Bombay Hospital, Mumbai, India

International Faculty
Prof. Dr. John Bennett, USA
Prof. Dr. Eva Hellström-Lindberg, Sweden

For more information visit www.hemato-onco.com arrow

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Another Step on the Journey to Hope for MDS Patients:
New Study Demonstrates Survival Benefit in Patients with MDS

Patients with myelodysplastic syndromes should find great hope in the results of a recently completed, large, randomized Phase 3 study of azacitadine (Vidaza® - a demethalating drug) versus conventional care.  This study demonstrated a two-year survival of 50.8% vs. 26.2% for Vidaza and conventional care, respectively.  Patients receiving Vidaza lived 9.4 months longer (24.4 months vs. 15 months for Vidaza and conventional care, respectively) than patients who received conventional care.  This is the first time that any drug has been shown to lengthen the lives of MDS patients.

Click here for more information arrow

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Pharmion's Oral Azacitidine Granted Fast Track Status for
Myelodysplastic Syndromes

BOULDER, Colo., Aug. 29 /PRNewswire-FirstCall/ -- Pharmion Corporation (Nasdaq: PHRM) today announced that the U.S. Food and Drug Administration (FDA) has granted Fast Track designation for oral Azacitidine in the treatment of Myelodysplastic Syndromes (MDS).

Fast Track programs are designed to facilitate the development and expedite the review of new drugs that are intended to treat serious or life-threatening conditions and that demonstrate the potential to address unmet medical needs. Fast Track emphasizes the critical nature of close, early communication between the FDA and sponsors. The benefits of Fast Track include scheduled meetings to seek FDA input into development plans, and the option of submitting a New Drug Application in sections rather than all components simultaneously. These meetings can help the FDA and sponsors reach early agreement on design of the clinical efficacy studies that will be needed to support approval.

Click here to read the article on Pharmion's site arrow

Click here download the PDF article arrow

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Vidaza Significantly Extends Overall Survival by 74% in Phase 3 Trial in Myelodysplastic Syndromes (MDS)

  • Two year survival rate of 50.8 percent for Vidaza versus 26.2 for conventional care regimens
  • 9.4 months median survival benefit for patients on Vidaza compared to conventional care regimens
  • Only agent to demonstrate survival benefit in MDS compared to conventional care regimens
  • Only epigenetic modifier to show survival benefit in cancer
  • Stratified log-rank p-value = 0.0001, Hazard ratio = 0.58
  • Largest study ever conducted in higher-risk MDS

Click here to see the full report arrow

Important Research Study Opportunity

Researchers at the H. Lee Moffitt Cancer Center and Research Institute in Tampa, FL are looking for people who have recently been diagnosed with MDS to participate in a research study designed to better understand why people get myelodysplastic syndrome. Specifically, researchers are studying a part of the chromosome called the telomere to see if telomeres are shorter in people with MDS as compared to people who don’t have MDS. A specific gene, called human telomerase reverse transcriptase, or hTERT, will also be studied, to see if hTERT is related to telomere length. People who participate in this study will be asked to complete a questionnaire and provide a blood sample. Participation in this research study will not in any way affect an individual’s medical care or MDS treatment options. To find out more information about this important research study, please contact Kristen Jonathan at 813-745-8395 or email kristen.jonathan@moffitt.org.

Pharmion Corporation Announces FDA Approval of Vidaza NDA
Supplement for IV Administration

Vidaza is the only approved DNA demethylation agent with Labeled IV administration of less than one hour. With this approval, Vidaza may now be administered intravenously over a period of 10 to 40 minutes in a clinic or hospital setting.

Click here for more information

Oral Azacitidine Advances to Multi-Center, Multi-Cycle, Dose Escalation Study

Click here for more information

Announcing DACO-016 AML Study

Very few treatment options are available for older patients with acute myeloid leukemia (AML). As the population ages, there appears to be an increasing incidence of AML in those patients over 65 years. MGI PHARMA is sponsoring a worldwide study evaluating the efficacy of Dacogen in patients older than 65 years with AML. Dacogen was approved by the FDA in May 2006 for the treatment of myelodysplastic syndromes. Dacogen has a unique mechanism of action in that it works as a hypomethylating agent rather than as a chemotherapeutic agent.  This may allow for less toxic treatment of AML compared to standard chemotherapy.

Click here for more information

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Physicians Treating Patients with MDS

In an effort to further our educational initiatives devoted to the prevention, treatment, and study of the myelodysplastic syndromes, we’ve comprised a brief survey for physicians who treat patients with MDS. Your assistance will be very useful in the development of future educational and treatment strategies.

Click here to complete the survey red-triangle

MGI PHARMA Announces Publication of Phase 2 Data Describing DacogenTM (Decitabine) for Injection in Blood

Click here for more information

Announcing a New Resource for MDS Physicians and Researchers

This new resource for the community of MDS physicians and researchers will present access to a repository of information that will provide a decision support mechanism to further enable evidence-based treatment. In addition, data from the ADOPT Registry will stimulate future research into the proper management of MDS. These data will be available to all participating centers for use in publications and research endeavors.

Physicians & Researchers click here for more information and to participate

Insurance and Reimbursement Resources for MDS Patients in the USA

We have assembled a listing of assistance programs available to MDS patients. It is important to know that there is support for those who cannot afford medicine or other healthcare costs. Click on the item of interest below for more information or click here to request an Insurance and Reimbursement Booklet. We hope this new resource will be beneficial in helping you with your medical needs.

Ask about iron is an education program for those at most risk for iron overload disease due to blood transfusions.

Click here for more information

MDS FOUNDATION RESOURCE CENTER
Understanding The Myelodysplastic Syndromes

Visit This New Resource for Healthcare Professionals

The MDS Foundation's Awareness Program for 2007
Understanding MDS: A Primer for Practicing Clinicians

Segment 1, The Past & Present in MDS is available free of charge. This segment introduces the group of bone marrow disorders called MDS and provides a history of myelodysplastic syndromes up to the present time.

Segment 2, Clinical Presentation, Diagnosis, and Pathology is available free of charge. This segment provides an insightful overview of the clinical picture of adult and pediatric patients with primary or secondary MDS. Diagnosing MDS based on morphologic, cytogenetic, and pathologic criteria are also discussed.

Segment 3, Ineffective Hematopoiesis: Considerations in Diagnosis and Treatment is available free of charge. This segment provides insight into the pathogenic mechanisms that contribute to the development of MDS, including the altered bone marrow microenvironment of MDS in terms of cells, cytokines, growth factors, receptors, and microvasculature; dyserythropoiesis in MDS, and therapeutic targets and approved drugs for the treatment of MDS.

Click here to register

Help the Foundation and Buy Your MDS Textbooks From Us!

Click here for more information

Emerging Treatment Options for Adult MDS:
A Clinical Perspective

The incidence of myelodysplastic syndromes (MDS) is increasing in tandem with our aging population. In turn, the disease burden on the patient and health care system is increasing exponentially. New treatment options must be assessed with this in mind.

Click here for more information

 

 

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The MDS Foundation is supported by unrestricted educational grants from the sponsors shown on the left.