Amyotrophic Lateral Sclerosis Assn
Public records show a registered, tax-exempt organization in good standing.
What it says it does
LEADING THE FIGHT TO CURE AND TREAT ALS THROUGH RESEARCH, ADVOCACY AND CARE SERVICES.
- Income
- $20.9 million
- Spending
- $26.0 million
- Spent on programs
- 67%
- Reserves
- 0.3 months of spending
- Largest source of income
- donations and private grants, 79%
- Employees
- 0
- Volunteers
- 20
Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Weak: 39 out of 100. Higher than 7% of charities in its peer group (diseases, $10m to $100m).
Reserves
4 of 35Spendable reserves would cover 0.3 months of spending.
Debt
20 of 20It owes 15% of what it owns.
Living within its means
0 of 15Spending exceeded income by 24% of income.
Income trend
0 of 15Income fell 69% on the year before.
Spending floor
15 of 1567% of spending went to programs and raising each dollar of donations cost 32 cents.
Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Good: 84 out of 100. Higher than 14% of charities in its peer group (diseases, $10m to $100m).
Independent board
25 of 2520 of 20 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
8 of 8Has a written whistleblower policy.
Record keeping policy
7 of 7Has a written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
10 of 10Gave the board a copy of this return before filing it.
Independent check of accounts
0 of 15Its accounts were not audited or reviewed by an independent accountant.
No reported misuse
10 of 10Reports no diversion of assets, excess benefits or loans to insiders.
Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (3)
- $11.1 million spent. 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.
- $3.2 million spent. RESEARCH PROGRAMS - THE ASSOCIATION FUNDS SCIENTIFIC RESEARCH GRANTS TO DOCTORS/SCIENTISTS TO FIND THE CAUSE AND CURE OF AMYOTROPHIC LATERAL SCLEROSIS (ALS).
- $3.2 million spent. THE ALS ASSOCIATION DEVELOPS AWARENESS AND UNDERSTANDING OF ALS AND THE WORK OF THE ASSOCIATION AMONG THE GENERAL PUBLIC, HEALTHCARE PROFESSIONALS, THE SCIENTIFIC COMMUNITY AND ELECTED AND OTHER GOVERNMENT OFFICIALS. THE ALS ASSOCIATION'S ADVOCACY EFFORTS HELP SECURE FEDERAL AND STATE FUNDING IN SUPPORT OF ALS RESEARCH AND SUPPORT FOR PEOPLE LIVING WITH ALS. THE ADVOCACY EFFORTS INCLUDE ADVANCES IN LEGISLATION TO HELP THOSE LIVING WITH ALS NAVIGATE INSURANCE AND OTHER GOVERNMENT PROGRAMS.
Source: Form 990 for the year ending June 30, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending June 2025.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since July 1990.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.
Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.