NATIONAL SCLERODERMA FOUNDATION INC

EIN: 521375827 501(c)(3) Medical Research

DANVERS, MA

Total Revenue
$6,628,652
Total Expenses
$6,783,274
Total Assets
$11,259,408
Net Assets
$8,332,615
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Financial Trends

Organization Details

Formation Year
1993
Legal Domicile
IL
Principal Officer
MARY J WHEATLEY
Phone
8007224673
Tax Period
2024-07-01 to 2025-06-30

NATIONAL SCLERODERMA FOUNDATION INC, founded in 1993, is a community nonprofit in the Medical Research sector that reported $6.6M in total revenue in fiscal year 2024. Revenue surged 34% from the prior year, signaling strong growth momentum.

Mission

THE NATIONAL SCLERODERMA FOUNDATION'S MISSION IS TO ADVANCE MEDICAL RESEARCH, PROMOTE DISEASE AWARENESS, AND PROVIDE SUPPORT AND EDUCATION TO PEOPLE WITH SCLERODERMA, THEIR FAMILIES AND SUPPORT NETWORKS.

Program Service Accomplishments

Program 1
Expenses: $2,737,760

A RELENTLESS FORCE IN FINDING A CURE AND IMPROVING THE LIVES OF PEOPLE AFFECTED BY SCLERODERMA, THE NATIONAL SCLERODERMA FOUNDATION ADVANCES MEDICAL RESEARCH, PROMOTES DISEASE AWARENESS, AND PROVIDES...

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A RELENTLESS FORCE IN FINDING A CURE AND IMPROVING THE LIVES OF PEOPLE AFFECTED BY SCLERODERMA, THE NATIONAL SCLERODERMA FOUNDATION ADVANCES MEDICAL RESEARCH, PROMOTES DISEASE AWARENESS, AND PROVIDES SUPPORT AND EDUCATION TO PEOPLE WITH SCLERODERMA, THEIR FAMILIES AND SUPPORT NETWORKS. SUPPORTED BY A NETWORK OF THOUSANDS OF INDIVIDUALS ACROSS THE UNITED STATES, THE FOUNDATION IS THE LEADING NONPROFIT FUNDER OF PEER-REVIEWED RESEARCH TO DISCOVER THE CAUSE, UNDERSTAND THE MECHANISMS, AND OVERCOME SCLERODERMA FOREVER. SUPPORT: THE FOUNDATION SERVES PEOPLE LIVING WITH SCLERODERMA, AS WELL AS THEIR CAREGIVERS AND FAMILY MEMBERS BY PROVIDING ACCESS TO SUPPORT GROUPS. IN THE WAKE OF THE PANDEMIC, THE FOUNDATION PIVOTED FROM IN-PERSON TO VIRTUAL COMMUNITY SUPPORT, ALLOWING MEMBERS OF THE SCLERODERMA COMMUNITY TO CONNECT NO MATTER WHERE THEY WERE IN THE COUNTRY. THIS ALSO ALLOWED FOR THE CREATION OF MORE TARGETED, TOPICAL SUPPORT GROUPS SUCH AS ONE FOR MEN, WHICH MAKE UP JUST 20% OF THE POPULATION IMPACTED BY SCLERODERMA, AND BIPOC, AS WELL AS YOUNG ADULTS. EDUCATION: THE FOUNDATION PROVIDES EDUCATION ABOUT HOW TO LIVE BETTER WITH SCLERODERMA FOR THOSE AFFECTED BY THE DISEASE, AS WELL AS THEIR CAREGIVERS, FAMILIES AND SUPPORT NETWORKS. THE FOUNDATION IS ALSO A CME AND CNE PROVIDER, EDUCATING HEALTHCARE PROVIDERS ABOUT SIGNS AND SYMPTOMS, TIMELY DIAGNOSIS, AND CUTTING-EDGE TREATMENTS AND THERAPIES. THE NATIONAL SCLERODERMA CONFERENCE ATTRACTS MORE THAN 400 PARTICIPANTS ANNUALLY AND PROVIDES COMMUNITY SUPPORT, WORLD CLASS EDUCATION, AND NETWORKING OPPORTUNITIES FOR PEOPLE LIVING WITH SCLERODERMA, CAREGIVERS, FAMILY MEMBERS, AND FRIENDS. THE SEMINARS SERVE AS AN EXCELLENT RESOURCE FOR PHYSICIANS AND OTHER HEALTHCARE PROFESSIONALS, WHO ALSO NEED COMPREHENSIVE INFORMATION ABOUT THE DISEASE.

Program 2
Expenses: $1,545,164

RESEARCH: IN FY 2025, THE FOUNDATION MADE A COMMITMENT OF $1.2 MILLION TO FUND RESEARCH. THIS FUNDING AIMS TO STIMULATE AND SUPPORT INVESTIGATIONS INTO BETTER UNDERSTANDING THE MECHANISMS THAT CAUSE...

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RESEARCH: IN FY 2025, THE FOUNDATION MADE A COMMITMENT OF $1.2 MILLION TO FUND RESEARCH. THIS FUNDING AIMS TO STIMULATE AND SUPPORT INVESTIGATIONS INTO BETTER UNDERSTANDING THE MECHANISMS THAT CAUSE THE DISEASE, HOW TO PREVENT AND ACCURATELY DIAGNOSIS AND TREAT THE DISEASE, AND ULTIMATELY FIND A CURE FOR SCLERODERMA. EACH AWARD IS $200,000 SPREAD OVER MULTIPLE YEARS. IN FY 2025, FOUR AWARDS WERE TWO-YEAR ESTABLISHED INVESTIGATOR AWARDS, AND TWO AWARDS WERE THREE-YEAR NEW INVESTIGATOR AWARDS. NEW INVESTIGATOR AWARDS ARE INTENDED TO HELP EMERGING SCIENTISTS GATHER SUFFICIENT DATA TO DEMONSTRATE THE VALUE OF THEIR AREA OF INVESTIGATION AND ATTRACT LARGER FUNDING FROM OTHER SOURCES. THE FOUNDATION'S PEER REVIEWED RESEARCH GRANTS PROGRAM PRIORITIZES SCIENTIFIC MERIT AND IS ADMINISTERED BY THE FOUNDATION'S RESEARCH COMMITTEE. THIS COMMITTEE, COMPOSED OF SCLERODERMA EXPERTS FROM ACROSS THE COUNTRY, MAKES FUNDING RECOMMENDATIONS TO THE BOARD OF DIRECTORS ANNUALLY AFTER A RIGOROUS PEER REVIEW PROCESS.THE PEER-REVIEW RESEARCH COMMITTEE IS COMPOSED OF HIGHLY RESPECTED SCIENTIFIC EXPERTS WHO REVIEW, CRITIQUE, AND RANK ALL APPLICATIONS BASED ON THE NATIONAL INSTITUTES OF HEALTH'S RANKING SYSTEM. ONLY PROJECTS OF SIGNIFICANT SCIENTIFIC MERIT ARE FUNDED. EACH GRANT APPLICATION CONTAINS VERY SPECIFIC ELIGIBILITY AND REVIEW CRITERIA. DETAILS REGARDING THESE REQUIREMENTS ARE AVAILABLE AT WWW.SCLERODERMA.ORG. ALL APPLICATIONS UNDERGO RIGOROUS PEER REVIEW AND ARE SCORED AND RANKED ACCORDING TO THE REVIEW CRITERIA AND OVERALL MERIT OF THE PROPOSAL. PEER REVIEW RANKINGS ARE SENT TO THE FOUNDATION'S RESEARCH COMMITTEE FOR QUALIFICATION BEFORE BEING PRESENTED TO THE FOUNDATION BOARD OF DIRECTORS FOR FINAL APPROVAL OF FUNDING. AFTER THE AWARDS ARE MADE, ALL RECIPIENTS ARE REQUIRED TO COMPLETE FUNDING CONTRACTS WITH INSTITUTIONAL SIGN-OFF AND MUST ALSO SUBMIT ANNUAL REPORTS ON THEIR PROGRESS. ALL REPORTS ARE REVIEWED BY THE FOUNDATION'S RESEARCH COMMITTEE TO ENSURE COMPLIANCE WITH PROGRAMMATIC, SCIENTIFIC, AND FISCAL AND ADMINISTRATIVE POLICES AND REQUIREMENTS.

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

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Financial Overview (2024)

Revenue Breakdown

Contributions & Grants $5,597,175
Program Service Revenue $0
Investment Income $1,165,141
Other Revenue $-133,664
TOTAL REVENUE $6,628,652

Expense Breakdown

Grants Paid $1,199,988
Salaries & Benefits $3,255,131
Fundraising Expenses $1,297,685
Program Expenses $4,282,924
Other Expenses $2,328,155
TOTAL EXPENSES $6,783,274

Year-over-Year Comparison

2024 2023 Change
Revenue $6,628,652 $4,941,722 +0.3%
Expenses $6,783,274 $6,956,852 0.0%
Net Income $-154,622 $-2,015,130 -0.9%
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
19
Independent Members
19
Employees
33
Volunteers
275

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
6
$446,661
Total Directors
19
$0
Key Employees
0
$0
Highest Compensated
3
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
KEVIN BOYANOWSKI CHAIR 2.00
Officer Director
$0 $0 $0
CAROL FEGHALI-BOSTWICK PH D VICE CHAIR 2.00
Officer Director
$0 $0 $0
BLAKE EMBREE TREASURER 2.00
Officer Director
$0 $0 $0
MARCIA WALKER SECRETARY 2.00
Officer Director
$0 $0 $0
LINDA BORNSTEIN BAUM OD DIRECTOR 2.00
Director
$0 $0 $0
MARY BLADES DIRECTOR 2.00
Director
$0 $0 $0
COURTNEY CALIENDO ESQ DIRECTOR 2.00
Director
$0 $0 $0
TERA CARTER DIRECTOR 2.00
Director
$0 $0 $0
SCOTT CERESNAK MD DIRECTOR 2.00
Director
$0 $0 $0
ZEBA HYDER DIRECTOR 2.00
Director
$0 $0 $0
AJ NAHMAD DIRECTOR 2.00
Director
$0 $0 $0
TRACY PORTER MED SPHR DIRECTOR 2.00
Director
$0 $0 $0
NANCY WALTERMIRE DIRECTOR 2.00
Director
$0 $0 $0
CHRISTINA LOCCKE DIRECTOR 2.00
Director
$0 $0 $0
JANE LADAS DIRECTOR 2.00
Director
$0 $0 $0
COS MALLOZZI DIRECTOR 2.00
Director
$0 $0 $0
MARK OROZCO III MBA DIRECTOR 2.00
Director
$0 $0 $0
J MICHAEL LEVENGOOD ESQ DIRECTOR 2.00
Director
$0 $0 $0
PEGGY COLLINS DIRECTOR 2.00
Director
$0 $0 $0
MARY J WHEATLEY CEO 37.50
Officer
$253,027 $24,976 $278,003
MICHAEL B HYDE VP OF FINANCE 37.50
Officer
$131,092 $37,566 $168,658
ASHLEY M PRUETT VP OF COMMUNITY ENGAGEMENT 37.50
Highest
$144,410 $25,629 $170,039
CATHERINE M ANASTASIA SENIOR DIRECTOR, MISSION DELIVERY 37.50
Highest
$113,309 $15,021 $128,330
ELIZABETH J MULROY SENIOR DIRECTOR, CHAPTER OPERATIONS 37.50
Highest
$113,580 $3,892 $117,472
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
2025 $6,628,652 $6,783,274 $11,259,408 $-154,622
2024 $4,941,722 $6,956,852 $11,162,466 $-2,015,130
2023 $6,915,898 $6,461,742 $12,897,422 $454,156
2022 $4,581,467 $6,210,712 $11,463,074 $-1,629,245
2021 $4,188,631 $4,468,676 $13,492,271 $-280,045
2020 $3,811,707 $5,012,061 $11,612,013 $-1,200,354
2019 $4,729,306 $4,798,303 $12,200,138 $-68,997
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