NATIONAL SCLERODERMA FOUNDATION

As filed

Subsection

03

NTEE code

H400

Classification

1200

Street

55 FERNCROFT RD STE 315

These codes are the IRS's own and are shown exactly as filed. What each one means is in the Business Master File documentation (opens in a new tab).

Mission and programs · 2024

• 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.

Officers and directors · 2024

As listed in Part VII of the 2024 return, in the order the filer printed them. Each return names its own; this is not a roster the organization keeps with us.

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. Earlier years are each on their own filing page.

Filings

• 2024

  Revenue

  $6,628,652

  Expenses

  $6,783,274

  Contributions

  $5,597,175

  Grants paid

  $1,199,988

• 2023

  Revenue

  $4,941,722

  Expenses

  $6,956,852

  Contributions

  $3,912,611

  Grants paid

  $1,453,529

• 2022

  Revenue

  $6,915,898

  Expenses

  $6,461,742

  Contributions

  $6,057,608

  Grants paid

  $1,812,000

The four totals the IRS asks for on Part I of the Form 990, as filed. A dash means the figure was not present on the return — not that it was zero.

Other returns filed

• 2021 · 990

  Revenue

  $4,581,467

  Expenses

  $6,210,712

  Assets (EOY)

  $11,463,074

• 2020 · 990

  Revenue

  $4,188,631

  Expenses

  $4,468,676

  Assets (EOY)

  $13,492,271

• 2019 · 990

  Revenue

  $3,811,707

  Expenses

  $5,012,061

  Assets (EOY)

  $11,612,013

• 2018 · 990

  Revenue

  $4,729,306

  Expenses

  $4,798,303

  Assets (EOY)

  $12,200,138

• 2017 · 990

  Revenue

  $4,939,002

  Expenses

  $5,001,317

  Assets (EOY)

  $11,983,494

• 2016 · 990

  Revenue

  $5,165,236

  Expenses

  $5,211,320

  Assets (EOY)

  $12,288,226

• 2015 · 990

  Revenue

  $4,338,344

  Expenses

  $4,935,756

  Assets (EOY)

  $12,011,971

• 2014 · 990

  Revenue

  $5,222,808

  Expenses

  $5,627,220

  Assets (EOY)

  $12,755,110

• 2013 · 990

  Revenue

  $4,848,710

  Expenses

  $4,331,065

  Assets (EOY)

  $12,465,186

• 2012 · 990

  Revenue

  — not reported

  Expenses

  $4,069,723

  Assets (EOY)

  $11,639,084

Nonprofiteer parses Forms 990, 990-EZ and 990-PF, in a window of recent tax years. These returns are recorded from the IRS e-file index, so their figures were extracted by that index rather than read from the return here — treat them as a different source from the filings above, not as more of the same record. A dash means the index carries no figure; Form 990-T listings carry none at all. Showing the 10 most recent; the API carries the rest.

Grants made

• CASE WESTERN RESERVE UNIVERSITY

  $200,000

  2023 · RESEARCH

• KAO AUTOIMMUNITY INSTITUTE CEDARS-SINAI MEDICAL CENTER

  $200,000

  2023 · RESEARCH

• THE REGENTS OF THE UNIVERSITY OF MICHIGAN

  $200,000

  2023 · RESEARCH

• THE REGENTS OF THE UNIVERSITY OF MICHIGAN

  $200,000

  2023 · RESEARCH

• THE UNIVERSITY OF TEXAS AT EL PASO

  $200,000

  2023 · RESEARCH

• VIRGINIA COMMONWEALTH UNIVERSITY

  $200,000

  2023 · RESEARCH

• BENAROYA RESEARCH INSTITUTE AT VIRGINIA MASON

  $200,000

  2022 · RESEARCH

• BOSTON CHILDRENS HOSPITAL

  $200,000

  2022 · RESEARCH

• BOSTON UNIVERSITY

  $200,000

  2022 · RESEARCH

• BOSTON UNIVERSITY

  $200,000

  2022 · RESEARCH

The 10 largest by cash amount. The API serves every itemized grant.

Where these grants went next →

Grants received

• SCLERODERMA FOUNDATION TRI-STATE INC CHAPTER

  $176,264

  2023 · SUPPORT, OUTREACH, RESEARCH

• SCLERODERMA FOUNDATION OF GREATER CHICAGO

  $83,780

  2023 · FUND RESEARCH PROJECTS

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $43,897

  2024 · For grant recipient's exempt purposes

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $42,013

  2022 · For grant recipient's exempt purposes

• AMERICAN ONLINE GIVING FOUNDATION INC

  $37,630

  2024 · GENERAL SUPPORT

• AMERICAN ONLINE GIVING FOUNDATION INC

  $36,490

  2023 · GENERAL SUPPORT

• PAYPAL CHARITABLE GIVING FUND

  $35,322

  2024 · GENERAL SUPPORT

• DONOR ADVISED CHARITABLE GIVING

  $34,950

  2024 · HEALTH

• AMERICAN ONLINE GIVING FOUNDATION INC

  $29,420

  2022 · GENERAL SUPPORT

• FIDELITY INVESTMENTS CHARITABLE GIFT FUND

  $27,781

  2023 · For grant recipient's exempt purposes

The 10 largest by cash amount. The API serves every itemized grant.

Related organizations

From Schedule R Part II, where a filer lists the tax-exempt organizations it is related to by control. It does not record shared board members or money.

Other IRS files