ALS Network
Public records show a registered, tax-exempt organization in good standing.
What it says it does
The mission of ALS Network is to partner with the ALS community as we drive the discovery of prevention strategies, treatments, and cures for ALS; provide access to quality care and connection; and promote initiatives to improve health outcomes.
- Income
- $13.5 million
- Spending
- $12.0 million
- Spent on programs
- 85%
- Reserves
- 12.2 months of spending
- Largest source of income
- donations and private grants, 71%
- Employees
- 64
- Volunteers
- 592
- Highest pay
- $411,567, president emeritus
Source: Form 990 for the year ending January 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Strong: 100 out of 100. Higher than 93% of charities in its peer group (health care, $10m to $100m).
Reserves
35 of 35Spendable reserves would cover 12.2 months of spending.
Debt
20 of 20It owes 11% of what it owns.
Living within its means
15 of 15Income exceeded spending by 11% of income.
Income trend
15 of 15Income rose 17% on the year before.
Spending floor
15 of 1585% of spending went to programs and raising each dollar of donations cost 7 cents.
Source: Form 990 for the year ending January 31, 2025, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Strong: 100 out of 100. Higher than 52% of charities in its peer group (health care, $10m to $100m).
Independent board
25 of 2518 of 18 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.
Pay set independently
5 of 5Sets its chief executive's pay through independent review and comparison.
Independent check of accounts
15 of 15Its accounts were audited 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 January 31, 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 (4)
- $5.6 million spent. Our mission critical program priorities include care services, research, and advocacy. These programs are provided to people with ALS and their families at no charge. Our accomplishments for fiscal year ending 1/31/24 are as follows:Care Management -Strategically based in and near patients' home communities, ALS Network Care Managers (CMs) work directly with persons with ALS and their families and serve as part of the treatment team in collaboration with clinicians from ALS specialty care clinics. Among other things, CMs provide critical information and referrals to patients and families, help patients obtain medical and communication-related equipment, connect them with essential resources, advocate for the uninsured, explain medical directives, and offer psychosocial support. In addition, the CM program provides help navigating complex benefits systems, more than 30 monthly support groups, bereavement support, educational webinars, safety assessments, in-clinic support, and many other things. This program is available throughout California and Hawaii. This program provided support to over 2,500 people living with with ALS and their families. Service was available for 365 days.
- $1.9 million spent. 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.
- $1.6 million spent. ALS Clinic Support - ALS Network is committed to making sure people living with ALS have access to specialized care that is based on best practices. Proven by research to help people with ALS live longer and better lives, access to high quality specialty care is one of the cornerstones of the ALS Network wraparound model of care. Care services staff members are embedded in each ALS specialty clinic, where they act as key members of the multidisciplinary team and provide comprehensive support to persons with ALS and their family members/caregivers. This model of care brings together a team of health care professionals specially trained to address the needs of people living with ALS, allowing them to receive care from each discipline during a single visit. The care team typically includes a neurologist, physical therapist, occupational therapist, respiratory therapist, nurse, dietitian, speech language pathologist, social worker, mental health professional, and ALS Network liaison. The ALS clinics supported by ALS Network provide compassionate care in a supportive, family-oriented atmosphere. In addition to supporting established ALS specialty clinics, the ALS Network supports, staffs, and promotes satellite clinics that improve access to critically needed services in areas that would otherwise lack ALS specialty care.
- $1.1 million spent. ALS Network advances scientific discovery by providing financial support for research aimed at developing treatments and cures for ALS and related neurodegenerative diseases. We award competitive grants and fund collaborative research programs with universities, pharmaceutical companies, and ALS research organizations, using a rigorous proposal, evaluation, and oversight process to ensure scientific merit and impact
Source: Form 990 for the year ending January 31, 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 January 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 January 2024.
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.