ALS Charities: Reading the Fine Print on a Cure

What the IRS 990 Forms Reveal About ALS Charity Spending

Line-by-Line Walk-Through of a Sample ALS Charity 990

We know that researching charities is one more thing on an already full plate. But pulling an ALS charity's Form 990 can tell you a great deal -- quickly -- about where your dollars will go.

Three sections carry the most weight for families and caregivers: Part III (Statement of Program Service Accomplishments), Part VIII (Statement of Revenue), and Part IX (Statement of Functional Expenses). Part III describes what the organization actually did during the year -- patients served, grants awarded, equipment provided -- in the specific, measurable terms the IRS requires.

Part IX is the clearest financial indicator: it breaks every dollar of spending into three labeled columns showing how much went to program services, how much to management and general costs, and how much to fundraising.^[4] A charity that directs the majority of its spending into column B (program services) of Part IX is showing you, in the IRS's own required format, that mission work comes first.^[5]

Red-Flag Phrases That Signal Low Program Impact

When reviewing a charity's Form 990, vague language in Part III is a meaningful warning sign -- descriptions like "raised awareness" or "supported families" without numbers attached tell you little about actual program delivery.^[7] The IRS requires measurable outcome statements in this section, so broad or generic phrasing can signal the substance may be missing.^[7] Compensation described as "based on a percentage of assets or revenue" is worth pausing on, because it ties leadership incentives to financial growth rather than to the mission of serving people living with ALS.^[6] Mentions of insider transactions without clear explanation, or a missing conflict of interest policy, indicate governance gaps that can quietly redirect dollars away from research and the families who need support most.^[6] You deserve to give with confidence -- and these details help make that possible.

ALS United vs. National Peers: A Dollar-to-Impact Comparison Table

Column 1: Percent to Research, Column 2: Percent to Patient Services, Column 3: Weeks to Grant Approval

When comparing ALS charities side by side, three data points matter most to the families we serve: what share of spending reaches research, what share reaches direct patient services, and how quickly grant dollars move to households managing ALS financial costs.

Our own member organizations -- like ALS United Connecticut, which has earned consecutive four-star Charity Navigator ratings -- demonstrate what a focused, community-rooted model can achieve.^[8] A local approach can allow faster grant delivery and more direct accountability compared to organizations carrying larger national administrative structures.

Placing these three metrics side by side gives families a clearer, more honest picture of mission efficiency than an overall star rating provides on its own.

Why Smaller Regional Charities Sometimes Outperform Big Names

Mid-sized nonprofits -- those with investable assets between $5 million and $75 million -- are more financially resilient than both larger and smaller peers, with 69% meeting multiple measures of financial health compared to 65% of larger organizations.^[10] These organizations also tend to carry higher liquid asset levels and lower debt ratios, meaning more stability for consistent program delivery.^[10] Research from Baruch College found that charities willing to challenge conventional financial norms -- including the pressure to minimize overhead -- directed about 53% more spending toward mission work over a 10-year period than those following standard rules.^[11] For families navigating ALS together, a community-rooted charity's willingness to invest in people and grant processing can translate directly into faster, more meaningful support when it matters most.

How ALS United's Care Grant Speed Compares to Industry Average

For families living with ALS, how quickly a grant arrives matters just as much as the dollar amount. Every week of delay is a week of out-of-pocket costs for people who are already stretched.

Among our member organizations, ALS Northwest publishes a two-week window to communicate approval status after receiving a completed application, then another two weeks to mail a check once reimbursement paperwork is submitted.^[13] Across our network, we work to compress these timelines wherever local capacity allows -- because we are here for you, and urgency is part of how we show it. Understanding each organization's processing timeline before you apply helps you plan, and we encourage families to ask that question directly when reaching out to any ALS charity.

5 Questions to Ask Before You Donate--Printable Wallet Card

Does the Charity Fund Both Research and Daily Patient Bills?

Is There a 24-Hour Direct Line for Families--And Do They Pick Up? Knowing a charity's availability before you need them urgently is part of making an informed choice -- and it's a question we encourage every family to ask.

Within our network, ALS of Michigan runs its patient services team Monday through Friday, 8:30 a.m. to 4:30 p.m., with home visits available for families who cannot travel to the office.^[18] From the very first contact, their team connects newly diagnosed individuals and their families with a Social Work or Patient Services Coordinator who helps map available services -- equipment loans, transportation assistance, in-home care, and community resources.^[18] For families seeking caregiver support resources outside standard hours, we recommend asking each organization directly which programs offer emergency or after-hours alternatives. We are here for you -- and part of that means helping you find the right door to knock on, at any hour.

A Final Word: You Don't Have to Navigate This Alone

Choosing where to direct your support is one of the most meaningful decisions a family affected by ALS can make. The numbers, ratings, and 990 line items in this guide are tools -- but behind every metric is a person who needs care, a caregiver who needs rest, and a community that needs to know someone is fighting alongside them.

At ALS United, we are that community. Our member organizations across the country are dedicated to delivering hope, resources, and meaningful support -- from rapid grant processing to specialized care coordination -- while working together toward a cure. Together we end ALS.

If you are ready to take the next step, we invite you to Donate Now and direct your gift to the local member organization serving your community.