Lupus Foundation of America Inc

What it reported doing in 2024

Research: recent therapeutic advances have significantly improved outcomes for people with lupus, with approximately 97 percent of patients now living at least five years after diagnosis. Despite this progress, continued research is essential to enhance quality of life and deepen understanding of the disease. The lupus foundation of america anchors its research efforts in three interconnected priorities: advancing clinical care, expanding equitable access to care, and accelerating drug development. A cornerstone initiative is the addressing lupus pillars for health advancement (alpha) project, a global, multi-phase effort to identify urgent unmet needs in lupus care. In 2025, alpha expanded its focus to patient-provider communication and barriers to high-quality care. The team conducted a review of more than 2,300 articles, developed a decision-making framework, and held focus groups with individuals living with lupus to better understand treatment challenges. These efforts led to the creation of a prototype shared decision-making toolavailable in paper and mobile formatsto help patients better understand treatment options and collaborate effectively with providers.a roadmap identifying u.s. "rheumatology deserts" was developed to improve access to timely diagnosis and care. Additionally, a consensus-based manuscript outlining solutions to racial and ethnic disparities was published in arthritis care and research and featured in healio magazine.the foundation also funds fellowships and early-career development grants to ensure training support for lupus researchers. It partners with lupus canada to administer the catalyst grant and actively pursues federal, state, and industry funding to strengthen lupus research pipelines. Research investments include support for a multi-year study of mesenchymal stromal cells as a potential lupus treatment, led by the medical university of South Carolina in partnership with the national institute for allergy and infectious diseases. All participants have completed the study, and results are expected in 2026. Additionally, the lfa-funded care lupus study, part of the predict and prevent lupus program, has made significant progress in identifying first-degree relatives at risk of developing lupus.the foundation also supports the systemic lupus erythematosus collaborating clinics (slicc) in updating the fda-accepted slicc damage index, participates in lupus abc to improve clinical trial outcome measures, and partners in the treatment response measure for sle (trm-sle) project to elevate the patient voice.the ray registry continues to expand as a vital patient data platform. Since october 2024, 473 new participants enrolled, bringing total enrollment to 7,163. Recruitment efforts have increased representation among black/african american participants and other racial and ethnic groups. Most new enrollees have systemic lupus erythematosus (sle), with a median age of 45. In 2025, the ray platform was upgraded to enhance communication, expand global reach, and improve patient-reported data collection to accelerate research and clinical trial participation.

Financial Efficiency

• Mission deployment rate: 83.8%; rating input score 84
• Program expense ratio: 74.8%; rating input score 75
• Fundraising efficiency: $4.76 raised per $1 spent on fundraising; rating input score 19; 19th percentile among comparable filings

Transparency & Controls

• Consistency checks: 89.5%; rating input score 89; 3rd percentile among comparable filings
• Pay-setting controls: 4 of 6 controls in place; rating input score 67
  • Compensation committee: Pass
  • Independent consultant: Missing
  • Other Form 990s reviewed: Pass
  • Written employment contract: Missing
  • Compensation survey or study: Pass
  • Board or committee approval: Pass
• Foreign activity oversight: Limited
• Grant itemization coverage: 47%; rating input score 47; 11th 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; 66th 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: -11.6%; rating input score 9; 9th percentile among comparable filings
• Total-asset coverage ratio: 0.68; rating input score 23; 23rd percentile among comparable filings
• Liabilities to assets ratio: 0.58; rating input score 23; 23rd percentile among comparable filings
• Officer compensation ratio: 17.2%; rating input score 6; 6th percentile among comparable filings

Growth

• Program expense growth: 3.1% per year; rating input score 100; 27th percentile among comparable filings
• Revenue growth: 2.1% per year; rating input score 100; 19th percentile among comparable filings
• Asset growth: 4.2% per year; rating input score 100; 30th percentile among comparable filings