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CHARITY REVIEW
Issued: May 2025 Expires: May 2027

Scleroderma Research Foundation

Standards Not Met
Standards Not Met
3 6 7 14 16
(415) 834-9444
220 Montgomery Street, Suite 484
San Francisco, CA, 94104
https://srfcure.org
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Standards For Charity Accountability

Governance

  1. Board Oversight
  2. Board Size
  3. Board Meetings
  4. Board Compensation
  5. Conflict of Interest

Measuring Effectiveness

  1. Effectiveness Policy
  2. Effectiveness Report

Finances

  1. Program Expenses
  2. Fundraising Expenses
  3. Accumulating Funds
  4. Audit Report
  5. Detailed Expense Breakdown
  6. Accurate Expense Reporting
  7. Budget Plan

Fundraising & Info

  1. Truthful Materials
  2. Annual Report
  3. Website Disclosures
  4. Donor Privacy
  5. Cause Marketing Disclosures
  6. Complaints

Scleroderma Research Foundation does not meet the following 5 Standards for Charity Accountability:

Standard 3 (Frequency and Attendance of Board Meetings)
An organization shall have a minimum of three evenly spaced meetings per year of the full governing body with a majority in attendance, with face-to-face participation. A conference call of the full board can substitute for one of the three meetings of the governing body. For all meetings, alternative modes of participation are acceptable for those with physical disabilities.

SRF does not meet this Standard because:

  • The board of directors held two meetings during 2024.

Standard 6 (Board Policy on Effectiveness)
Have a board policy of assessing, no less than every two years, the organization's performance and effectiveness and of determining future actions required to achieve its mission.

SRF does not meet this Standard because:

  • The board of directors does not have a written policy stating that, at least every two years, an appraisal be done assessing the organization’s performance and effectiveness and determining future actions required to achieve its mission.

Standard 7 (Board Approval of Written Report on Effectiveness)
Submit to the organization's governing body, for its approval, a written report that outlines the results of the aforementioned performance and effectiveness assessment and recommendations for future actions.

SRF does not meet this Standard because:

  • The organization has not completed an effectiveness assessment in the last two years.

Standard 14 (Budget)
Have a board-approved annual budget for its current fiscal year, outlining projected expenses for major program activities, fund raising, and administration.

SRF does not meet this Standard because, when the organization provided 2025 budget information, it indicated that the budget:

  • Did not identify total projected program service expenses nor include a breakdown by major program service category.
  • Did not identify total projected fundraising expenses.
  • Did not identify total projected administrative expenses.

Standard 16 (Annual Report)
Have an annual report available to all, on request, that includes: (a) the organization's mission statement, (b) a summary of the past year's program service accomplishments, (c) a roster of the officers and members of the board of directors, (d) financial information that includes (i) total income in the past fiscal year, (ii) expenses in the same program, fund raising and administrative categories as in the financial statements, and (iii) ending net assets.

SRF does not meet this Standard because the 2023 annual report did not include:

  • Total end of year net assets.

Scleroderma Research Foundation meets the remaining 15 Standards for Charity Accountability.

Stated Purpose:
"to fund and facilitate the most promising, highest quality research aimed at improved therapies and, ultimately, a cure for scleroderma."

Year, State Incorporated:
1987, CA

Scleroderma Research Foundation (SRF) reports that it works to find a cure for scleroderma, which is a chronic autoimmune disease that causes the hardening and thickening of skin and connective tissues. The organization invests in research, identifying projects and investigators that will improve therapies and enhance patient outcomes. SRF also developed and operates, CONQUEST, a global clinical trial platform designed to advance treatments and the development of new drugs for scleroderma patients. In addition, the organization reports that it promotes patient education and disease awareness.

For the year ended December 31, 2023, Scleroderma Research Foundation's program expenses were:

Research $3,547,920
Platform clinical trial services $1,513,167
Education and awareness $553,858
Total Program Expenses $5,614,945

Chief Executive
Joanne Gold, Executive Director

Compensation*
$206,500

Chair of the Board
Luke Evnin, PhD

Chair's Profession / Business Affiliation
Venture Capitalist

Board Size
12

Paid Staff Size
7

*2023 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.

Method(s) Used:
Direct mail appeals, Grant proposals, Internet, Direct mail appeals, Planned giving arrangements, Cause-related marketing (affinity credit cards, consumer product sales, etc.)

Fundraising costs were 11% of related contributions. (Related contributions, which totaled $3,674,004, are donations received as a result of fundraising activities.)

This organization is tax-exempt under section 501(c)(3) of the Internal Revenue Code. It is eligible to receive contributions deductible as charitable donations for federal income tax purposes.

The following information is based on Scleroderma Research Foundation's audited financial statements for the year ended December 31, 2023.

Source of Funds
Clinical trial services $3,832,233
Individual contributions $1,501,624
Foundation and corporate contributions $1,290,040
Special events, net $882,340
Interest and investment income, net $864,269
Other income $7,255
Total Income $8,377,761

Programs: 87% Fundraising: 6% Administrative: 7%

Total Income $8,377,761
Total expenses: $6,447,322
  Program expenses $5,614,945
  Fundraising expenses $395,928
  Administrative expenses $436,449
  Other expenses $0
Income in Excess of Expenses $1,930,439
Beginning Net Assets $9,601,918
Other Changes In Net Assets $0
Ending Net Assets $11,532,357
Total Liabilities $7,122,391
Total Assets $18,654,748

An organization may change its practices at any time without notice. A copy of this report has been shared with the organization prior to publication. It is not intended to recommend or deprecate, and is furnished solely to assist you in exercising your own judgment. If the report is about a charity and states the charity meets or does not meet the Standards for Charity Accountability, it reflects the results of an evaluation of information and materials provided voluntarily by the charity. The name Better Business Bureau is a registered service mark of the International Association of Better Business Bureaus.

This report is not to be used for fundraising or promotional purposes.

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Report completed by:
BBB Wise Giving Alliance