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THE MYELODYSPLASTIC SYNDROMES FOUNDATION

NEW YORK, NY · EIN 223283911 · Form 990 · FY2024 · NTEE G30 · Voluntary Health Associations · Medium ($1M-$10M)
revenue
$2.0M
expenses
$3.0M
net assets
$3.6M
employees
11
volunteers
6
program ratio
65%
mission · from form 990

ESTABLISHED BY AN INTERNATIONAL GROUP OF PHYSICIANS AND RESEARCHERS TO PROVIDE AN ONGOING EXCHANGE OF INFORMATION RELATING TO MDS.

profile · synthesized from sources

The Myelodysplastic Syndromes Foundation supports research and education in the field of myelodysplastic syndromes (MDS). It funds early-career researchers, convenes international scientific working groups, and organizes educational symposia for hematologists, nurses, and allied health professionals. The organization also promotes awareness of clinical trials and facilitates patient recruitment through its global network of MDS specialists.

irs program accomplishments · form 990 part iii · fy2024

What they reported doing

  1. #1 primary $265K
    EDUCATIONAL SYMPOSIA AND A BI-ANNUAL CONFERENCE ARE CONDUCTED FOR SEVERAL SOCIETIES AND ASSOCIATIONS SUCH AS THE AMERICAN SOCIETY OF HEMATOLOGY AND THE ONCOLOGY NURSING SOCIETY. THESE INFORMATIVE AND INTERACTIVE SYMPOSIA ARE AIMED AT HEMATOLOGISTS AND NURSES WORKING IN HEMATOLOGY, AS WELL AS FELLOWS IN HEMATOLOGY, PHARMACISTS WORKING WITH MDS PATIENTS, AND ALLIED HEALTH PROFESSIONALS WORKING IN THE FIELD OF MDS PATIENT CARE AND TREATMENT.
  2. #2 $355K
    THE MDS FOUNDATION SUPPORTS AND ADVANCES SCIENTIFIC RESEARCH IN MYELODYSPLASTIC SYNDROMES (MDS) THROUGH ITS YOUNG INVESTIGATOR RESEARCH PROGRAM. THE FOUNDATION INVITES EARLY-CAREER INVESTIGATORS TO SUBMIT PROPOSALS FOCUSED ON BASIC SCIENCE OR CLINICAL RESEARCH RELATED TO THE CAUSES, EPIDEMIOLOGY, MOLECULAR BIOLOGY, CYTOGENETICS, MORPHOLOGY, PROGNOSIS, AND MANAGEMENT OF MDS.IN ADDITION TO FUNDING INDIVIDUAL RESEARCH, THE FOUNDATION CONVENES INTERNATIONAL WORKING GROUPS COMPOSED OF LEADING SCIENTISTS AND PHYSICIANS TO COLLABORATIVELY IMPROVE DIAGNOSTIC STANDARDS, PROGNOSTIC TOOLS, AND TREATMENT STRATEGIES.THE MDS FOUNDATION ALSO PLAYS A KEY ROLE IN PROMOTING AWARENESS OF ONGOING CLINICAL TRIALS AND SUPPORTING PATIENT RECRUITMENT EFFORTS. THROUGH ITS GLOBAL NETWORK OF HEMATOLOGISTS AND CENTERS OF EXCELLENCE, THE FOUNDATION HELPS CONNECT ELIGIBLE PATIENTS TO CLINICAL RESEARCH OPPORTUNITIES AIMED AT IMPROVING CARE AND ADVANCING POTENTIAL CURES.THE FOUNDATION MAINTAINS A GLOBAL NETWORK OF HEMATOLOGISTS WHO ARE INFORMED ABOUT ONGOING CLINICAL TRIALS AND CAN REFER ELIGIBLE PATIENTS INTO THESE RESEARCH PROTOCOLS, SUPPORTING THE ADVANCEMENT OF MDS TREATMENT AND CARE.
named programs · 4 · from sources

What they call their work

Clinical Trial Awareness and Recruitment Support
Promotes awareness of ongoing MDS clinical trials and connects eligible patients to research opportunities via a global network of hematologists and centers of excellence.
Educational Symposia and Bi-Annual Conference
Hosts educational events for hematologists, nurses, pharmacists, and allied health professionals through partnerships with organizations like the American Society of Hematology and the Oncology Nursing Society.
International Working Groups
Convenes panels of leading scientists and physicians to improve diagnostic standards, prognostic tools, and treatment strategies for MDS.
Young Investigator Research Program
Funds early-career researchers conducting basic or clinical research on the causes, epidemiology, molecular biology, and management of myelodysplastic syndromes (MDS).
activities · 3 groups

What they do

  • Medical Professional Education & Training 1 activity
    • Organizing educational symposia and bi-annual conferences for healthcare professionals in MDS care
      Conducts educational symposia and a bi-annual conference in collaboration with professional societies such as the American Society of Hematology and the Oncology Nursing Society, targeting hematologists, nurses, fellows, pharmacists, and allied health professionals involved in myelodysplastic syndromes (MDS) care.
  • Bleeding and Blood Disorder Support Services 1 activity
    • Supporting patient recruitment for MDS clinical trials
      Facilitates patient enrollment in clinical trials by raising awareness and connecting eligible patients to research opportunities through a global network of hematologists and designated centers of excellence.
  • Uncategorized 2 activities
    • Convening international scientific working groups to advance MDS standards and treatments
      Brings together international working groups of leading scientists and physicians to collaboratively improve diagnostic criteria, prognostic tools, and treatment strategies for myelodysplastic syndromes (MDS).
    • Funding early-career investigators for MDS research
      Funds early-career scientists and clinicians through the Young Investigator Research Program to conduct basic and clinical research on the causes, epidemiology, molecular biology, cytogenetics, morphology, prognosis, and management of myelodysplastic syndromes (MDS).
financials · form 990 · fy2024
revenue
Total revenue$2.00M
Contributions & grants$1.95M97%
Program service revenue$00%
Investment income$4K0%
Other revenue$50K
expenses
Total expenses$2.95M
Program expenses65%
Admin / overhead15%
Fundraising20%
Salaries & benefits$850K
Grants paid out$355K
Largest expense lineCompensation
balance sheet
Total assets$3.85M
Cash$2.86M
Investments$0
Liabilities$258K
Net assets$3.59M
Liquid reserves11.6 mo
4 years on record · 2020–2024 · YoY revenue -21.9%
leadership · form 990 part vii · fy2024

Who runs it

paid leadership · 4
NameTitleHours/wkCompensation
TRACEY IRACA EXECUTIVE DIRECTOR (THROUGH 1/25) 40 $156K
ASHLEY R MONCRIEF PATIENT CARE DIRECTOR 40 $138K
TANYA RHODES DEVELOPMENT DIRECTOR 40 $128K
LEA HARRISON SECRETARY 40 $96K
board members · 6
  • DR LUCA MALCOVATI — DIRECTOR
  • DR MICHAEL SAVONA — DIRECTOR
  • DR PETER GREENBERG — DIRECTOR
  • DR PIERRE FENAUX — DIRECTOR
  • DR STEPHEN NIMER — CHAIRMAN
  • SANDY KURTIN — TREASURER
relationships · 2

Who they work with

  • American Society of Hematology Partner — Collaborates with the MDS Foundation to deliver educational symposia and conferences for hematologists and other healthcare professionals.
  • Oncology Nursing Society Partner — Partners with the MDS Foundation to provide educational programming for nurses and allied health professionals in MDS care.
strategies · 2

How they approach the work

Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.

  • Early-Career Research Investment
    methodology: early-career research investment
    By funding early-career investigators, the foundation accelerates innovation and discovery in MDS diagnosis and treatment because fresh perspectives and emerging talent drive scientific advancement in basic and clinical research.
  • International Expert Consensus Collaboration
    methodology: international expert consensus collaboration
    By convening international, multidisciplinary expert working groups, the foundation improves MDS care standards because consensus-driven processes yield more reliable, evidence-based, and globally applicable clinical guidelines.