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Nonprofiteer
← NATIONAL SCLERODERMA FOUNDATION

Form 990 for tax year 2024

Filed by NATIONAL SCLERODERMA FOUNDATION.

Totals

Total revenue
$6,628,652
Total expenses
$6,783,274
Contributions and grants received
$5,597,175
Grants paid
$1,199,988
Program service revenue
$0
Investment income
$1,165,141
Other revenue
-$133,664
Total assets, end of year
$11,259,408
Total liabilities, end of year
$2,926,793
Net assets or fund balances, end of year
$8,332,615
Program services expenses (Part IX)
$4,282,924
Management and general expenses
$1,202,665
Fundraising expenses
$1,297,685
Program service expenses (Part III)
$4,282,924

Program services were 63.1% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.

Line items

Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.

Revenue

Part VIII, the statement of revenue.

  • 1c · Fundraising events

    $946,703

  • 1f · All other contributions, gifts and grants

    $4,650,472

  • 3 · Investment income

    total $233,654 · excluded $233,654

  • 7a · Gross sales of assets other than inventory

    securities $2,863,632

  • 7b · Less cost or other basis and sales expenses

    securities $1,932,145

  • 7c · Gain or loss

    securities $931,487

  • 7d · Net gain or loss

    total $931,487 · excluded $931,487

  • 8a · Fundraising events: gross income

    $140,692

  • 8a · Fundraising events: contributions included on line 1c

    $946,703

  • 8b · Fundraising events: direct expenses

    $274,356

  • 8c · Net income from fundraising events

    total -$133,664 · excluded -$133,664

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $1,199,988 · program services $1,199,988

  • 5 · Compensation of officers, directors and key employees

    total $549,811 · program services $186,921 · management and general $330,662 · fundraising $32,228

  • 7 · Other salaries and wages

    total $2,056,745 · program services $1,505,378 · management and general $380,079 · fundraising $171,288

  • 8 · Pension plan contributions

    total $46,451 · program services $34,414 · management and general $8,145 · fundraising $3,892

  • 9 · Other employee benefits

    total $386,932 · program services $279,647 · management and general $74,538 · fundraising $32,747

  • 10 · Payroll taxes

    total $215,192 · program services $142,027 · management and general $56,165 · fundraising $17,000

  • 11b · Fees: legal

    total $26,158 · program services $15,694 · management and general $5,232 · fundraising $5,232

  • 11c · Fees: accounting

    total $47,800 · program services $28,680 · management and general $9,560 · fundraising $9,560

  • 11f · Fees: investment management

    total $67,652 · management and general $67,652

  • 11g · Fees: other

    total $347,443 · program services $173,944 · management and general $36,663 · fundraising $136,836

  • 12 · Advertising and promotion

    total $3,588 · program services $1,620 · management and general $540 · fundraising $1,428

  • 13 · Office expenses

    total $178,126 · program services $27,889 · management and general $9,045 · fundraising $141,192

  • 14 · Information technology

    total $414,034 · program services $248,420 · management and general $82,807 · fundraising $82,807

  • 16 · Occupancy

    total $177,362 · program services $101,509 · management and general $33,284 · fundraising $42,569

  • 17 · Travel

    total $192,716 · program services $117,696 · management and general $37,510 · fundraising $37,510

  • 19 · Conferences, conventions and meetings

    total $548,871 · program services $64,351 · management and general $18,660 · fundraising $465,860

  • 22 · Depreciation, depletion and amortization

    total $28,704 · program services $17,222 · management and general $5,741 · fundraising $5,741

  • 23 · Insurance

    total $84,705 · program services $50,823 · management and general $16,941 · fundraising $16,941

  • 24a · Other expenses: FEES AND LICENSES

    total $178,742 · program services $86,701 · management and general $29,441 · fundraising $62,600

  • 24b · Other expenses: OUTREACH

    total $32,254 · fundraising $32,254

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $878,390 · end of year $404,938

  • 3 · Pledges and grants receivable

    beginning of year $602,650 · end of year $1,686,370

  • 9 · Prepaid expenses and deferred charges

    beginning of year $268,330 · end of year $315,284

  • 10a · Land, buildings and equipment: cost or other basis

    $354,368

  • 10b · Land, buildings and equipment: accumulated depreciation

    $280,530

  • 10c · Land, buildings and equipment, net

    beginning of year $48,920 · end of year $73,838

  • 11 · Investments: publicly traded securities

    beginning of year $9,255,822 · end of year $8,454,497

  • 15 · Other assets

    beginning of year $108,354 · end of year $324,481

  • 17 · Accounts payable and accrued expenses

    beginning of year $377,001 · end of year $826,364

  • 18 · Grants payable

    beginning of year $2,166,680 · end of year $1,650,007

  • 19 · Deferred revenue

    beginning of year $174,024 · end of year $153,388

  • 25 · Other liabilities

    beginning of year $91,564 · end of year $297,034

  • 27 · Net assets without donor restrictions

    beginning of year $5,825,611 · end of year $4,595,071

  • 28 · Net assets with donor restrictions

    beginning of year $2,527,586 · end of year $3,737,544

Mission and programs · 2024

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.

  • 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.

    Expenses $2,737,760

  • 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.

    Expenses $1,545,164 · Grants $1,199,988

As filed on the 2024 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • Kevin Boyanowski

    CHAIR

    Total calculated
    $0
    Hours/week
    2

  • Carol Feghali-Bostwick Ph D

    VICE CHAIR

    Total calculated
    $0
    Hours/week
    2

  • Blake Embree

    TREASURER

    Total calculated
    $0
    Hours/week
    2

  • Marcia Walker

    SECRETARY

    Total calculated
    $0
    Hours/week
    2

  • Linda Bornstein Baum Od

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Mary Blades

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Courtney Caliendo Esq

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Tera Carter

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Scott Ceresnak MD

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Zeba Hyder

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Aj Nahmad

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Tracy Porter Med Sphr

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Nancy Waltermire

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Christina Loccke

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Jane Ladas

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Cos Mallozzi

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Mark Orozco III MBA

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • J Michael Levengood Esq

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Peggy Collins

    DIRECTOR

    Total calculated
    $0
    Hours/week
    2

  • Mary J Wheatley

    CEO

    Total calculated
    $278,003
    From this org
    $253,027
    From related orgs
    $0
    Other
    $24,976
    Hours/week
    37.5

    Schedule J breakdown matched by us

    Base
    $234,901
    Bonus
    $18,126
    Other
    $0
    Deferred
    $7,318
    Nontaxable benefits
    $17,658
    Filer's total
    $278,003

  • Michael B Hyde

    VP OF FINANCE

    Total calculated
    $168,658
    From this org
    $131,092
    From related orgs
    $0
    Other
    $37,566
    Hours/week
    37.5

    Schedule J breakdown matched by us

    Base
    $128,063
    Bonus
    $3,029
    Other
    $0
    Deferred
    $4,003
    Nontaxable benefits
    $33,563
    Filer's total
    $168,658

  • Ashley M Pruett

    VP OF COMMUNITY ENGAGEMENT

    Total calculated
    $170,039
    From this org
    $144,410
    From related orgs
    $0
    Other
    $25,629
    Hours/week
    37.5

    Schedule J breakdown matched by us

    Base
    $142,126
    Bonus
    $2,284
    Other
    $0
    Deferred
    $4,603
    Nontaxable benefits
    $21,026
    Filer's total
    $170,039

  • Catherine M Anastasia

    SENIOR DIRECTOR, MISSION DELIVERY

    Total calculated
    $128,330
    From this org
    $113,309
    From related orgs
    $0
    Other
    $15,021
    Hours/week
    37.5

  • Elizabeth J Mulroy

    SENIOR DIRECTOR, CHAPTER OPERATIONS

    Total calculated
    $117,472
    From this org
    $113,580
    From related orgs
    $0
    Other
    $3,892
    Hours/week
    37.5

Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.

Schedule J

Answered yes

  • 3 · Approval by the board or compensation committee
  • 7 · Other non-fixed payments

Answered no

  • 4a · Severance or change-of-control payment
  • 4b · Supplemental nonqualified retirement plan
  • 4c · Equity-based compensation arrangement
  • 5a · Pay contingent on this organization's revenues
  • 5b · Pay contingent on a related organization's revenues
  • 6a · Pay contingent on this organization's net earnings
  • 6b · Pay contingent on a related organization's net earnings
  • 8 · Paid under the initial-contract exception

The filer's explanations (Part III)

PART I, LINE 7
AN ANNUAL INCENTIVE BONUS AMOUNT WILL BE UP TO TEN PERCENT OF BASE SALARY, PER BOARD APPROVAL. A REVIEW OF OVERALL PERFORMANCE WILL BE CONDUCTED ANNUALLY AND A POTENTIAL ANNUAL INCENTIVE BONUS REWARD WILL BE TIED TO COMPILED RESULTS OF THE ANNUAL REVIEW, AND PROGRESS TOWARDS GOALS IDENTIFIED DURING THE PRIOR YEAR'S REVIEW.

Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.

Grants on this return

Provenance

Return type
form_990
Tax year
2024
Filed
12 February 2026
IRS schema version
2024v5.5
Source object
202600499349300540

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