National Scleroderma Foundation Inc

What it reported doing in 2024

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.

Financial Efficiency

• Mission deployment rate: 76.2%; rating input score 76
• Program expense ratio: 63.1%; rating input score 63
• Fundraising efficiency: $4.31 raised per $1 spent on fundraising; rating input score 14; 14th percentile among comparable filings

Transparency & Controls

• Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
• Pay-setting controls: 1 of 6 controls in place; rating input score 17
  • Compensation committee: Missing
  • Independent consultant: Missing
  • Other Form 990s reviewed: Missing
  • Written employment contract: Missing
  • Compensation survey or study: Missing
  • Board or committee approval: Pass
• Foreign activity oversight: Limited
• Grant itemization coverage: 100%; rating input score 100; 72nd percentile among comparable filings
• Major donor itemization: Yes; rating input score 100
• Related-party transparency: Limited

Accountability

• Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
• Governance controls: 9 of 9 controls in place; rating input score 100
  • Conflict-of-interest policy: Pass
  • Whistleblower policy: Pass
  • Document-retention policy: Pass
  • CEO compensation review process: Pass
  • Other executive compensation review process: Pass
  • Form 990 shared with the board: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Pass
  • Independent financial-statement audit: Pass

Sustainability

• Operating margin: -2.3%; rating input score 26; 26th percentile among comparable filings
• Total-asset coverage ratio: 1.66; rating input score 55; 55th percentile among comparable filings
• Liabilities to assets ratio: 0.26; rating input score 38; 38th percentile among comparable filings
• Officer compensation ratio: 12.7%; rating input score 23; 23rd percentile among comparable filings

Growth

• Program expense growth: 0.6% per year; rating input score 100; 16th percentile among comparable filings
• Revenue growth: 2.1% per year; rating input score 100; 21st percentile among comparable filings
• Asset growth: 0.1% per year; rating input score 100; 13th percentile among comparable filings