| 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.
 Join
the Journey to Hope!
Results from Clinical
Trial Found that VIDAZA is the Only Agent to
Extend Survival in
Patients with Higher-Risk Myelodysplastic Syndromes
Click
here to read complete press release
A Phase II Study
of Efficacy of Rabbit Anti-thymocyte Globulin (rATG) in Patients
with
Low and Intermediate-1 Risk Myelodysplastic Syndrome
Click
here to read complete press release
Registration is free to MDS patients and carers.
Please
register with Jenny at Hartley Taylor on 01494 563804 or email Jenny@hartleytaylor.co.uk
Click here
for details and to register for this free event.
Click
here to view the meeting agenda.
Click
here for more information on the UK Patient Support Group.
 Click on your country's flag for more information and to register.
First and Only
Approved Platelet Producer Represents New Treatment Approach
for Serious Chronic Autoimmune Disorder
Amgen to Launch Nplate™ NEXUS
Program to Provide Treatment Access and Patient Support Programs
THOUSAND OAKS, Calif., (August 22,
2008) – Amgen Inc. (NASDAQ: AMGN) today announced that the
United States (U.S.) Food and Drug Administration (FDA) has approved
Nplate™ (romiplostim), the first and only platelet producer
for the treatment of thrombocytopenia in splenectomized (spleen
removed) and non-splenectomized adults with chronic immune thrombocytopenic
purpura (ITP). Nplate, the first FDA-approved peptibody protein,
works by raising and sustaining platelet counts, representing a
novel approach for the long-term treatment of this chronic disease.
Click
here for the full media details.
Due to fluctuating
currencies worldwide, the MDS Young Investigator Grant Awards
will increase to $50,000 each. It is essential to
develop the new generation of researchers so that the causes of
these syndromes are identified as soon as possible. To ensure that
this future generation of researchers flourishes, the MDS Foundation
will award two (2) fellowships in 2008.
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.
This year the application
deadline is August 15th. Notification
of the awards will occur by October 1, 2008 with activation on
January 1, 2009.
The two Young Investigator Grants awarded
for 2008 will be announced on December
5, 2008 at a formal awards
ceremony to be held in conjunction with the American Society
of Hematology’s annual meeting
in San Francisco, California.
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.
 Introduction
by Stephen Nimer, MD
Award
recipient Azim Mohamedali, PhD
Award
recipient Klas Raaschou-Jensen, MD
Conclusion
by Stephen Nimer, MD
- 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
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
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
Click
here to complete online
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
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
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.
- 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
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
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
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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