The ALS Association

What it reported doing in 2024

Patient and community services: the association is committed to providing fully developed, managed and evaluated programs and services to people living with als, families, caregivers and professionals across the united states. Programs incorporate the perspectives from key stakeholders including people living with the disease, subject matter experts, clinical best practice, caregivers, technology, academicians and research. Activities address current needs and explore future services, creating a foundation for innovative and advanced program development based on specific community needs and knowledge advancements. Specific activities include 1) developing and implementing clinical and professional education programs based on ongoing needs assessments and best practice; 2) implementing certified care center certification and recertification programs based on nationally-recognized standards of practice, including grants to support centers of excellence; 3) developing strategies and actualizing plans to deliver care through other than certified centers; 4) providing current information, resources and referrals to the communities we serve; and 5) developing and implementing comprehensive, consistent programs and services that address individual, family, and caregiver needs based on 'best practice and available resources.

Financial Efficiency

• Mission deployment rate: 84.3%; rating input score 84
• Program expense ratio: 67.4%; rating input score 67
• Fundraising efficiency: $3.15 raised per $1 spent on fundraising; rating input score 12; 12th percentile among comparable filings

Transparency & Controls

• Consistency checks: 89.5%; rating input score 89; 3rd percentile among comparable filings
• Pay-setting controls: Limited
• Foreign activity oversight: 3 of 8 controls in place; rating input score 38
  • Claims monitoring procedures: Pass
  • Requires narrative reports: Pass
  • Conducts field audits: Fail
  • May suspend future funding: Fail
  • Requires financial reports: Pass
  • Conducts site visits: Fail
  • Requires grant agreements: Fail
  • May require repayment: Fail
• 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; 66th percentile among comparable filings
• Governance controls: 5 of 7 controls in place; rating input score 71
  • Conflict-of-interest policy: Pass
  • Whistleblower policy: Pass
  • Document-retention policy: Pass
  • CEO compensation review process: NotApplicable
  • Other executive compensation review process: NotApplicable
  • Form 990 shared with the board: Pass
  • Board meeting minutes documented: Pass
  • Audit committee oversight: Missing
  • Independent financial-statement audit: Fail

Sustainability

• Operating margin: -24.3%; rating input score 4; 4th percentile among comparable filings
• Total-asset coverage ratio: 3.86; rating input score 80; 80th percentile among comparable filings
• Liabilities to assets ratio: 0.15; rating input score 65; 65th percentile among comparable filings
• Officer compensation ratio: 0%; rating input score 96; 96th percentile among comparable filings

Growth

• Program expense growth: 5.5% per year; rating input score 100; 45th percentile among comparable filings
• Revenue growth: 5.1% per year; rating input score 100; 44th percentile among comparable filings
• Asset growth: 7.5% per year; rating input score 100; 51st percentile among comparable filings