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← SCLERODERMA RESEARCH FOUNDATION

Form 990 for tax year 2022

Filed by SCLERODERMA RESEARCH FOUNDATION.

Totals

Total revenue
$5,892,738
Total expenses
$4,658,602
Contributions and grants received
$5,376,802
Grants paid
$2,442,093
Program service revenue
$170,531
Investment income
$116,754
Other revenue
$228,651
Total assets, end of year
$11,143,637
Total liabilities, end of year
$1,240,870
Net assets or fund balances, end of year
$9,902,767
Program services expenses (Part IX)
$3,740,100
Management and general expenses
$315,358
Fundraising expenses
$603,144
Program service expenses (Part III)
$3,740,100

Program services were 80.3% 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

    $837,642

  • 1f · All other contributions, gifts and grants

    $4,539,160

  • 1g · Noncash contributions included above

    $1,899,656

  • 2a · Program service revenue: Research collaboration

    total $170,531 · related or exempt $170,531

  • 3 · Investment income

    total $116,754 · excluded $116,754

  • 4 · Income from investment of tax-exempt bond proceeds

    total $0

  • 5 · Royalties

    total $0

  • 6d · Net rental income or loss

    total $0

  • 7d · Net gain or loss

    total $0

  • 8a · Fundraising events: gross income

    $454,200

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

    $837,642

  • 8b · Fundraising events: direct expenses

    $242,078

  • 8c · Net income from fundraising events

    total $212,122

  • 9c · Net income from gaming

    total $0

  • 10c · Net income from sales of inventory

    total $0

  • 11a · Other revenue: Other income

    total $16,529 · excluded $16,529

  • 11e · Other revenue, total

    $16,529

Functional expenses

Part IX, the statement of functional expenses.

  • 1 · Grants to domestic organizations and governments

    total $2,417,093 · program services $2,417,093

  • 2 · Grants to domestic individuals

    total $0

  • 3 · Grants to foreign organizations and individuals

    total $25,000 · program services $25,000

  • 4 · Benefits paid to or for members

    total $0

  • 5 · Compensation of officers, directors and key employees

    total $223,638 · program services $111,819 · management and general $44,728 · fundraising $67,091

  • 6 · Compensation of disqualified persons

    total $0

  • 7 · Other salaries and wages

    total $374,035 · program services $237,588 · management and general $38,331 · fundraising $98,116

  • 8 · Pension plan contributions

    total $0

  • 9 · Other employee benefits

    total $34,961 · program services $18,551 · management and general $6,026 · fundraising $10,384

  • 10 · Payroll taxes

    total $42,383 · program services $25,075 · management and general $5,319 · fundraising $11,989

  • 11a · Fees: management

    total $0

  • 11b · Fees: legal

    total $47,564 · program services $47,564

  • 11c · Fees: accounting

    total $144,045 · management and general $144,045

  • 11d · Fees: lobbying

    total $0

  • 11e · Fees: professional fundraising services

    total $0

  • 11f · Fees: investment management

    total $30,815 · management and general $30,815

  • 11g · Fees: other

    total $399,955 · program services $339,722 · management and general $9,082 · fundraising $51,151

  • 12 · Advertising and promotion

    total $249,070 · program services $162,499 · management and general $13,193 · fundraising $73,378

  • 13 · Office expenses

    total $94,861 · program services $57,685 · management and general $8,137 · fundraising $29,039

  • 14 · Information technology

    total $74,184 · program services $39,743 · management and general $3,111 · fundraising $31,330

  • 15 · Royalties

    total $0

  • 16 · Occupancy

    total $81,047 · program services $48,505 · management and general $8,084 · fundraising $24,458

  • 17 · Travel

    total $33,338 · program services $9,438 · management and general $1,263 · fundraising $22,637

  • 18 · Travel or entertainment for public officials

    total $0

  • 19 · Conferences, conventions and meetings

    total $360,283 · program services $184,199 · management and general $232 · fundraising $175,852

  • 20 · Interest

    total $0

  • 21 · Payments to affiliates

    total $0

  • 22 · Depreciation, depletion and amortization

    total $17,369 · program services $10,421 · management and general $1,737 · fundraising $5,211

  • 23 · Insurance

    total $8,961 · program services $5,198 · management and general $1,255 · fundraising $2,508

  • 24e · All other expenses

    total $0

Balance sheet

Part X, book values.

  • 1 · Cash, non-interest-bearing

    beginning of year $538,650 · end of year $1,489,493

  • 2 · Savings and temporary cash investments

    beginning of year $174 · end of year $174

  • 3 · Pledges and grants receivable

    beginning of year $1,491,312 · end of year $1,207,075

  • 4 · Accounts receivable

    beginning of year $9,653 · end of year $0

  • 5 · Loans and receivables from officers and key people

    beginning of year $11,000 · end of year $0

  • 6 · Loans and receivables from disqualified persons

    end of year $0

  • 7 · Other notes and loans receivable

    end of year $0

  • 8 · Inventories for sale or use

    end of year $0

  • 9 · Prepaid expenses and deferred charges

    beginning of year $28,972 · end of year $38,910

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

    $88,950

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

    $43,343

  • 10c · Land, buildings and equipment, net

    beginning of year $62,976 · end of year $45,607

  • 11 · Investments: publicly traded securities

    beginning of year $7,676,732 · end of year $8,215,407

  • 12 · Investments: other securities

    end of year $0

  • 13 · Investments: program-related

    end of year $0

  • 14 · Intangible assets

    end of year $0

  • 15 · Other assets

    end of year $146,971

  • 17 · Accounts payable and accrued expenses

    beginning of year $167,129 · end of year $775,777

  • 18 · Grants payable

    beginning of year $179,696 · end of year $20,000

  • 19 · Deferred revenue

    end of year $287,435

  • 25 · Other liabilities

    end of year $157,658

  • 27 · Net assets without donor restrictions

    beginning of year $7,232,642 · end of year $8,984,292

  • 28 · Net assets with donor restrictions

    beginning of year $2,240,002 · end of year $918,475

Mission and programs · 2022

Mission

The mission of the Scleroderma Research Foundation is to fund and facilitate the most promising, highest quality research aimed at new treatments and, ultimately, a cure for scleroderma.

Activities or mission (Part I)

The SRF is laser-focused on finding a cure for scleroderma by raising critical funds for research investments, fostering collaboration among the worlds top scientists and institutions to drive innovation, and raising awareness about this rare disease.

  • The mission of the Scleroderma Research Foundation (SRF) is to find, fund, and facilitate the most promising, highest-quality research to cure scleroderma. We recruit the best and the brightest researchers to understand the causes, discover treatments, and ultimately eradicate this disease . At the SRF, research is at the center of all we do. Our Research Program is governed by the Board of Directors and supported by a volunteer Scientific Advisory Board comprised of some of the world's most highly regarded scientists who are leaders in their field of expertise. The Board of Directors and Scientific Advisors meet annually with researchers and clinicians from laboratories across the nation to select and fund the most promising scleroderma studies aimed at developing improved therapies to help patients live longer, fuller lives - and, ultimately, to find a cure for scleroderma.

    Expenses $3,280,087 · Grants $2,442,093 · Revenue $170,531

  • The SRF Research Program: Led by a Scientific Advisory Board comprised of some of the most highly regarded scientists in the nation, the SRFs research program actively seeks out and recruits experts from the fields of rheumatology, immunology, genetics, and fibrosis, as well as, experts in cutting-edge technologies to join the scleroderma research community. With an intense focus on identifying projects and investigators likely to move scleroderma research forward, the SRF funds a diverse portfolio of projects led by top-tier investigators.

    Expenses $460,013

  • SRF Education & Awareness Program: Many patients hear the word scleroderma for the first time when they are diagnosed.We strive to raise awareness and provide educational resources because lack of awareness about scleroderma often causes delays in treatment or misdiagnosis. As an innovator in scleroderma research, the SRF is uniquely qualified to provide those living with this disease, the medical community, and the general public with the most up-to-date and relevant news and information about complications, treatments, and related research through our website, webinars, annual patient forum, and monthly eNewsletter. And we deliver stories of impact that connect and inspire patients, as well as address issues related to diversity, equity, and inclusion that patients may encounter as they navigate diagnosis, treatment, and living with the disease.

As filed on the 2022 return. The filer continues this part on Schedule O, which is not shown here.

Listed in Part VII

  • Joanne Gold

    Executive Dir.

    Total calculated
    $206,032
    From this org
    $193,724
    From related orgs
    $0
    Other
    $12,308
    Hours/week
    40

    Schedule J breakdown matched by us

    Base
    $193,724
    Bonus
    not reported
    Other
    not reported
    Deferred
    not reported
    Nontaxable benefits
    $12,308
    Filer's total
    $206,032

  • Gloria Blecha

    Development Mngr

    Total calculated
    $114,899
    From this org
    $104,973
    From related orgs
    $0
    Other
    $9,926
    Hours/week
    40

  • Luke Evnin PhD

    Chairman

    Total calculated
    $0
    Hours/week
    5

  • Bob Smith

    Treasurer

    Total calculated
    $0
    Hours/week
    2

  • Deann Wright

    Secretary

    Total calculated
    $0
    Hours/week
    2

  • Bob Saget

    Board Member

    Total calculated
    $0
    Hours/week
    2

  • Susan Feniger

    Board Member

    Total calculated
    $0
    Hours/week
    2

  • Sharon Dobie MD

    Board Member

    Total calculated
    $0
    Hours/week
    2

  • Eric Kau MD

    Board Member

    Total calculated
    $0
    Hours/week
    2

  • David Knoller

    Board Member

    Total calculated
    $0
    Hours/week
    2

  • Violetta Merin

    Board Member

    Total calculated
    $0
    Hours/week
    2

  • Caryn Zucker

    Board Member

    Total calculated
    $0
    Hours/week
    2

  • Regina Hall

    Board Member

    Total calculated
    $0
    Hours/week
    2

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 · Written employment contract
  • 3 · Approval by the board or compensation committee

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
  • 7 · Other non-fixed payments
  • 8 · Paid under the initial-contract exception

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

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

Provenance

Return type
form_990
Tax year
2022
Filed
21 September 2023
IRS schema version
2022v5.0
Source object
202342649349301624

Check it against the return as filed: the GivingTuesday Data Lake hosts a public copy of the original XML.

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