Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2024. IRS ruling in Feb 2018.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
85 cents of each dollar spent went to programs.
Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.
Something off? Claim to add context
Who runs it and what they're paid
10 people listed on the 990; $15K paid to officers and key staff (Part VII, Section A).
Anne Rugari’s $24K as Vice President/Treasurer is at the 15th percentile of top reported officer pay among 902 $100K–1M diseases & disorders nonprofits. Peer set: organizations in the same NTEE major field of work and revenue-size band, compared on each org’s own highest-paid officer/key-employee, from Form 990 Part VII / 990-PF Part VIII. Descriptive placement, not a verdict on whether the pay is appropriate.
Compensation history total reportable pay by year · 1 named individual · Part VII
| Name | FY2022 | FY2021 | FY2020 |
|---|---|---|---|
| Anne Rugari | $24,350 | $16,400 | $15,200 |
Total reportable compensation (Form 990 Part VII column D / Schedule J column E) by filing year, matched by name within this organization. The Schedule J base / bonus / deferred breakdown is not parsed into this dataset.
See Krabbe Connect executive salaries →Questions the 990 asks
The form asks each of these directly. These are the filed answers.
- Family or business ties among officersPt VI · Ln 2No
- Top official's pay set by an independent reviewPt VI · Ln 15aNo
Programs and updates
Connects families with Krabbe disease to comprehensive information and resources.
Questions for Krabbe Connect
Your first name shows with your question. Krabbe Connect answers here, for everyone.
Research and Development
Krabbeconnect produced a poster to discuss the patient burden of krabbe disease. Research conducted to collect data from patients to capture the unmet needs in the krabbe community. The research will serve as a tool to clinicians, scientists, researchers, and industry to help with the advancement of new novel treatments in the krabbe…
Form 990 Part III, line 4, FY2020. The organization’s own words, as filed with the IRS. Find it at the IRS (EIN 82-2964680) · Dispute this linePatient Engagement
Providing information and resources for krabbe disease through krabbeconnect website, facebook, and social medial channels. Engagement with families affected by the disease by offering support and connections for managing care of the patients.
Form 990 Part III, line 4, FY2020. The organization’s own words, as filed with the IRS. Find it at the IRS (EIN 82-2964680) · Dispute this linePatient Advocacy and Advancement
Board members routinely attend conferences and meetings that involve the rare disease community to support the needs of the krabbe patients and their families. Krabbeconnect also participates in networking opportunities with other advocacy foundations joining together to have a voice for the patients.
Form 990 Part III, line 4, FY2020. The organization’s own words, as filed with the IRS. Find it at the IRS (EIN 82-2964680) · Dispute this lineFunders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2020 990, line by line.
Download 990
| Line | Start FY20 | End FY20 |
|---|---|---|
| Cash and savingsLn 1–2 | $78K | $102K |
| Total assetsLn 16 | $78K | $102K |
| LiabilitiesLn 26 | $3K | $1K |
| Net assetsLn 32 | $75K | $101K |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Management feesLn 11a | $700 | $700 | ||
| Advertising and promotionLn 12 | $853 | $853 | ||
| Office expensesLn 13 | $2K | $2K | ||
| Information technologyLn 14 | $7K | $7K | ||
| Conferences, conventions and meetingsLn 19 | $5K | $5K | ||
| Other expenses (24a–d)Ln 24 | $59K | $58K | $703 | |
| Total functional expensesLn 25 | $75K | $63K | $12K | $0 |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2024 LatestFiled with the IRS Oct 23, 2025 | $314K | $189K | $125K | $502K | 990 PDF |
| FY2023Filed with the IRS Nov 15, 2024 | $295K | $192K | $103K | $377K | 990 PDF |
| FY2022Filed with the IRS Jul 24, 2023 | $201K | $107K | $95K | $274K | 990 PDF |
| FY2021Filed with the IRS Sep 2, 2022 | $149K | $71K | $79K | $180K | 990 PDF |
| FY2020 ViewingFiled with the IRS Jul 20, 2021 | $101K | $75K | $26K | $101K | 990 PDF |
Schedules filed Part IV
See the full FY2020 990
Part I · Summary $100,987 revenue, 12 lines filed
Part VI · Governance 10 of 10 board members independent, 2 to look at
Part VIII · Statement of revenue $100,987 across 5 lines filed
Part IX · Statement of functional expenses $74,892 across 6 lines filed
Part X · Balance sheet $102,299 assets, 8 lines filed
Part XI · Reconciliation of net assets $100,892 net assets at year end
Form 990 e-file FY2020 from the IRS (about our sources) · Classification, formation year and address from the IRS Business Master File
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