ALS Network

What it reported doing in 2024

Community Outreach & Awareness/Public Policy -Community outreach events, including our ALS Walk & Rolls, are opportunities to bring hope and a sense of community to persons with ALS and their families. By coming together to share their stories, people with ALS and their families, as well as those who have lost loved ones to ALS, find strength and support with one another. Community outreach events create an environment of empowerment where families and friends of persons with ALS are given an opportunity to affect public policy by signing petitions that are sent to the legislators representing their districts. These events also bring awareness to local communities of those fighting ALS and of the support available to them through ALS Network.The ALS Network Public Policy and Leadership Development program is intended to increase understanding, education and awareness of the devastating impact of ALS and the role that ALS Network plays in achieving the three core components of our mission; care and support for people with ALS and families, global research for treatments and cures, and important Public Policy initiatives. Through these efforts, we engage volunteers in the communities we serve and give them the opportunity to participate in advancing the activity of the organization and the achievement of our mission priorities. In addition, these activities have a direct positive impact on increasing access to care and ensuring significant federal funding of ALS research. This program also encompasses the organization's robust ALS Network Research Summit, an annual gathering of researchers, investigators, clinicians, biotech companies, government representatives and patient advocates in ALS and related fields. The purpose of the Summit is to increase, expedite and promote the amount and level of ALS and related research and to foster networking, collaboration and cooperation among investigators, their peers and their colleagues to identify, develop and deliver new and effective treatments, ideas and, ultimately, cures.

Financial Efficiency

• Mission deployment rate: 76.4%; rating input score 76
• Program expense ratio: 85.4%; rating input score 85
• Fundraising efficiency: $13.97 raised per $1 spent on fundraising; rating input score 48; 48th percentile among comparable filings

Transparency & Controls

• Consistency checks: 94.1%; rating input score 94; 20th percentile among comparable filings
• Pay-setting controls: 3 of 6 controls in place; rating input score 50
  • Compensation committee: Missing
  • Independent consultant: Missing
  • Other Form 990s reviewed: Missing
  • Written employment contract: Pass
  • Compensation survey or study: Pass
  • Board or committee approval: Pass
• Foreign activity oversight: Limited
• Grant itemization coverage: 90.4%; rating input score 90; 20th 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: 11.2%; rating input score 70; 70th percentile among comparable filings
• Total-asset coverage ratio: 1.37; rating input score 48; 48th percentile among comparable filings
• Liabilities to assets ratio: 0.11; rating input score 73; 73rd percentile among comparable filings
• Officer compensation ratio: 14%; rating input score 10; 10th percentile among comparable filings

Growth

• Program expense growth: 10.7% per year; rating input score 100; 73rd percentile among comparable filings
• Revenue growth: 9.1% per year; rating input score 100; 70th percentile among comparable filings
• Asset growth: 11.8% per year; rating input score 100; 72nd percentile among comparable filings