MYELODYSPLASTIC SYNDROMES FOUNDATION

aka MDS Foundation, Inc.   |   Yardville, NJ   |  www.mds-foundation.org

Mission

The MDS Foundation, Inc. is an international non-profit advocacy organization whose mission is to support and educate patients and healthcare providers with innovative research into the fields of MDS, Acute Myeloid Leukemia (AML) and related myeloid neoplasms in order to accelerate progress leading to the diagnosis, control and cure of these diseases.

Ruling year info

2000

Executive Director

Tracey Iraca

Main address

4573 South Broad Street Suite 150

Yardville, NJ 08620 USA

Show more contact info

EIN

22-3283911

NTEE code info

Cancer (G30)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Educate, support and empower patients, family members, and professionals battling an under diagnosed and under recognized rare disease, with few treatment options and no cure beyond a risky bone marrow transplant. Early diagnosis and treatment is key to slowing the progression of MDS to acute myeloid leukemia (AML).

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Building Blocks of Hope

A global MDS Foundation print and online patient advocacy initiative, providing a personalized educational program for the patient and caregiver to prepare, participate, and Live with MDS. Available through the MDS website at www.mds-foundation.org/bboh/

Population(s) Served
People with diseases and illnesses

Conducted 15 consecutive biennial MDS International Symposia for researchers, clinicians, scientists and educators from around the world dedicated to the treatment of MDS. www.kenes.com/mds

Population(s) Served
People with diseases and illnesses

Regional symposia to education healthcare professionals in far reaching areas of the world.

Population(s) Served
People with diseases and illnesses

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of Facebook followers

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of attendees present at rallies/events

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of copies of work distributed/sold

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Building Blocks of Hope

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of website pageviews

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of patients referred to specialists in the field of MDS

This metric is no longer tracked.
Totals By Year
Type of Metric

Outcome - describing the effects on people or issues

Direction of Success

Increasing

Number of translated languages for educational materials

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of participants attending course/session/workshop

This metric is no longer tracked.
Totals By Year
Population(s) Served

Health

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context Notes

Patient education and awareness events and professional symposium.

Number of people on the organization's email list

This metric is no longer tracked.
Totals By Year
Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Spread awareness of MDS to healthcare professionals who may not consider this diagnosis when treating patients presenting with anemia or multiple cytopenias.

Spread awareness of MDS to the general public to alert their treating physicians to consider MDS if they present with anemia or multiple cytopenias.

Raise funds to support research towards additional treatment options to improve the quality of life of MDS patients and their families.

Raise funds to support research towards a cure for MDS.

Patient and professional educational activities worldwide.

Awareness events and activities targeting the general public.

MDS resources available free of charge.

A unique range of international Board of Director members, Development Board members, Medical and Scientific Advisory Board members, Nurse Leadership Board members, as well as our MDS Centers of Excellence program consisting of more than 180 designated MDS Centers of Excellence worldwide. These caring and dedicated global contacts significantly expand the reach of the MDS Foundation.

Now, at almost 25 years since our incorporation, we have held 15 MDS Foundation international symposium events, and more than 25 MDS symposia in conjunction with major congress events, to educate professionals in the field of MDS, AML and MPNs. We have held hundreds of educational events for patients and family members. We offer multiple printed and electronic educational materials free of charge. We will continue these efforts, and expand with new efforts into the future.

Financials

MYELODYSPLASTIC SYNDROMES FOUNDATION
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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MYELODYSPLASTIC SYNDROMES FOUNDATION

Board of directors
as of 12/21/2020
SOURCE: Self-reported by organization
Board chair

Dr. Stephen Nimer

Sylvester Cancer Center, University of Miami

Term: 2008 -

Franz Schmalzl

No Affiliation

Alan List

H. Lee Moffitt Cancer Center and Research Institute

Peter Greenberg

Stanford University School of Medicine

John Bennett

University of Rochester Medical Center

Ghulam Mufti

King's College Hospital

Mario Cazzola

University of Pavia School of Medicine

Theo de Witte

University Medical Center Nijmegen St. Radboud

Charlotte Niemeyer

University Children's Hospital

Pierre Fenaux

Hopital St Louis

Stephen Nimer

Sylvester Comprehensive Cancer Center

Sandra Kurtin

Arizona Cancer Center

Erin Demakos

Mount Sinai School of Medicine

Silvia Magalhaes

Federal University of Ceara

Yasushi Miyazaki

Nagasaki University

Luca Malcovati

University of Pavia School of Medicine

Rafael Bejar

Moores Cancer Center

Benjamin Ebert

Dana-Farber Cancer Institute

Uwe Platzbecker

Universitatsklinikum Carl Gustav Carus

Akiko Shimamura

Dana-Farber Cancer Institute

Lewis Silverman

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 11/18/2020

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.

Equity strategies

Last updated: 11/18/2020

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.