THE MYELODYSPLASTIC SYNDROMES FOUNDATION

EIN: 223283911 501(c)(3) Diseases & Disorders

YARDVILLE, NJ

Total Revenue
$2,749,025
Total Expenses
$3,143,904
Total Assets
$5,216,502
Net Assets
$4,746,888
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Financial Vulnerability Assessment (Tuckman-Chang)

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Financial Trends

Organization Details

Formation Year
1999
Legal Domicile
NJ
Principal Officer
TRACEY A IRACA
Phone
8006370839
Tax Period
2023-01-01 to 2023-12-31

THE MYELODYSPLASTIC SYNDROMES FOUNDATION, founded in 1999, is a community nonprofit in the Diseases & Disorders sector that reported $2.7M in total revenue in fiscal year 2023. Revenue grew 9% year-over-year, indicating healthy expansion. Expenses of $3.1M exceeded revenue, resulting in a 14% operating deficit.

Mission

THE MDS FOUNDATION, INC. IS AN INTERNATIONAL ORGANIZATION DEVOTED TO THE SUPPORT AND EDUCATION OF PATIENTS AND HEALTHCARE PROVIDERS WITH INNOVATIVE RESEARCH IN THE FIELDS OF MDS AND RELATED MYELOID NEOPLASMS IN ORDER TO ACCELERATE PROGRESS LEADING TO THE CONTROL AND CURE OF THESE DISEASES

Program Service Accomplishments

Program 1

THE FOUNDATION CONTINUED ITS EXTENSIVE PATIENT ADVOCACY OUTREACH INITIATIVES IN 2023. THE FOUNDATION STAFF COMMUNICATES DAILY WITH PATIENTS AND CAREGIVERS PROVIDING SUPPORT AND EDUCATION REGARDING...

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THE FOUNDATION CONTINUED ITS EXTENSIVE PATIENT ADVOCACY OUTREACH INITIATIVES IN 2023. THE FOUNDATION STAFF COMMUNICATES DAILY WITH PATIENTS AND CAREGIVERS PROVIDING SUPPORT AND EDUCATION REGARDING THE MYELODYSPLASTIC SYNDROMES IN THE FOLLOWING FORMATS: PATIENT INFORMATION VIA THE FOUNDATIONS "BUILDING BLOCKS OF HOPE" INITIATIVE, MDS FOUNDATION NEWSLETTERS, AND THROUGH THE MDS FOUNDATION WEBSITE AND SOCIAL MEDIA CAMPAIGNS. ON-SITE PATIENT LIASON SUPPORT IS ALSO PROVIDED INCLUDING REFERRALS TO THE MDS CENTERS OF EXCELLENCE, PROVIDING INFORMATION ON CURRENT TREATMENT OPTIONS AND AVAILABLE CLINICAL TRIALS, RESPONSES TO EMAIL AND SOCIAL MEDIA INQUIRIES, AND PROVIDING A CONNECTION BETWEEN MDS PATIENTS UPON REQUEST.

Program 2
Expenses: $268,502

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...

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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.

Program 3

THE MDS FOUNDATION PROVIDES RESEARCH GRANTS FOR SCIENTIFIC INVESTIGATORS. THE FOUNDATION IS DEDICATED TO FURTHERING THE RESEARCH INTO MDS AND WILL INVITE YOUNG INVESTIGATORS TO SUBMIT PROPOSALS FOR...

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THE MDS FOUNDATION PROVIDES RESEARCH GRANTS FOR SCIENTIFIC INVESTIGATORS. THE FOUNDATION IS DEDICATED TO FURTHERING THE RESEARCH INTO MDS AND WILL INVITE YOUNG INVESTIGATORS TO SUBMIT PROPOSALS FOR EITHER BASIC RESEARCH OR CLINICAL MANAGEMENT INTO THE CAUSATION, EPIDEMIOLOGY, MOLECULAR BIOLOGY, CYTOGENETICS, MORPHOLOGY, PROGNOSIS AND MANAGEMENT OF THE MYELODYSPLASTIC SYNDROMES. IN ADDITION, THE FOUNDATION SPONSORS INTERNATIONAL WORKING GROUPS OF SCIENTISTS AND PHYSICIANS TO FURTHER DIAGNOSTIC, PROGNOSTIC AND TREATMENT TECHNIQUES. THE FOUNDATION HAS ALSO ESTABLISHED A PROCEDURE FOR CREATING AWARENESS OF CLINICAL TRIALS IN THE FIELD OF MDS AS WELL AS ASSISTING IN THE CLINICAL TRIAL RECRUITMENT PROCESS BY UTILIZING ITS OUTREACH TO

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Trantor Score

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2023)

Revenue Breakdown

Contributions & Grants $1,558,359
Program Service Revenue $972,104
Investment Income $32,321
Other Revenue $186,241
TOTAL REVENUE $2,749,025

Expense Breakdown

Grants Paid $348,164
Salaries & Benefits $651,149
Fundraising Expenses $9,498
Program Expenses $3,048,668
Other Expenses $2,144,591
TOTAL EXPENSES $3,143,904

Year-over-Year Comparison

2023 2022 Change
Revenue $2,749,025 $2,521,375 +0.1%
Expenses $3,143,904 $2,174,159 +0.4%
Net Income $-394,879 $347,216 -2.1%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Governance

Voting Members
6
Independent Members
6
Employees
9
Volunteers
30

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
4
$142,402
Total Directors
6
$0
Key Employees
0
$0
Highest Compensated
0
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
TRACEY A IRACA EXECUTIVE DI 40.00
Officer
$93,661 $0 $93,661
JANICE BUTCHKO SECRETARY 40.00
Officer
$48,741 $0 $48,741
SANDRA KURTIN PHD ANP-C AOCN TREASURER 4.00
Officer Director
$0 $0 $0
LUCA MALCOVATI MD BOARD MEMBER 4.00
Director
$0 $0 $0
MICHAEL R SAVONA MD BOARD MEMBER 4.00
Director
$0 $0 $0
PETER L GREENBERG MD BOARD MEMBER 4.00
Director
$0 $0 $0
STEPHEN D NIMER MD CHAIRMAN 4.00
Officer Director
$0 $0 $0
PIERRE FENAUX MD PHD BOARD MEMBER 4.00
Director
$0 $0 $0
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2024 No data No data No data No data
2023 $2,749,025 $3,143,904 $5,216,502 $-394,879
2023 No data No data No data No data
2022 $2,521,375 $2,174,159 $5,422,226 $347,216
2021 $4,660,616 $2,815,786 $5,238,327 $1,844,830
2020 $3,289,167 $2,011,416 $3,276,887 $1,277,751
2019 $2,910,023 $2,375,459 $1,973,323 $534,564
2018 $1,531,833 $1,198,934 $1,254,759 $332,899
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