Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in Sep 2014.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
75 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
14 people listed on the 990; $146K paid to officers and key staff (Part VII, Section A).
Kelly Miettunen’s $129K as Executive Director is at the 91st percentile of top reported officer pay among 901 $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 · 2 named individuals · Part VII
| Name | FY2025 | FY2024 | FY2023 | FY2022 | FY2021 | FY2020 |
|---|---|---|---|---|---|---|
| Kelly Miettunen | $128,606 | $100,029 | $100,029 | $101,188 | $89,321 | $61,175 |
| Kathleen O'Sullivan-Fortin | $17,538 | — | — | — | — | — |
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 Ald Connect INC 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
Improving health for those with X-linked ALD through awareness, patient empowerment, and research.
Questions for Ald Connect INC
Your first name shows with your question. Ald Connect INC answers here, for everyone.
Ald connect improves health outcomes for individuals and families affected by adrenoleukodystrophy (ald) through community engagement, research, education, patient support, and advocacy. The organization provides educational programs, webinars, community calls, peer mentoring, financial assistance, and patient resources; supports…
Form 990 Part III, line 4, FY2025. The organization’s own words, as filed with the IRS. Find it at the IRS (EIN 46-3749890) · 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 FY2025 990, line by line.
Download 990
| Line | Start FY25 | End FY25 |
|---|---|---|
| Cash and savingsLn 1–2 | $554K | $744K |
| InvestmentsLn 11–13 | $498K | $745K |
| Total assetsLn 16 | $1.3M | $1.5M |
| LiabilitiesLn 26 | $16K | $31K |
| Net assetsLn 32 | $1.2M | $1.5M |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $7K | $7K | ||
| Grants and assistance to foreign recipientsLn 3 | $202K | $202K | ||
| Pay of officers and key staff (Part IX, line 5)Ln 5 | $129K | $26K | $90K | $13K |
| Other salaries and wagesLn 7 | $18K | $18K | $0 | $0 |
| Payroll taxesLn 10 | $2K | $2K | $0 | $0 |
| Management feesLn 11a | $25K | $20K | $3K | $2K |
| Accounting feesLn 11c | $29K | $0 | $29K | $0 |
| Investment management feesLn 11f | $7K | $0 | $7K | $0 |
| Advertising and promotionLn 12 | $43K | $21K | $0 | $22K |
| Office expensesLn 13 | $19K | $0 | $19K | $0 |
| OccupancyLn 16 | $2K | $0 | $2K | $0 |
| TravelLn 17 | $12K | $12K | $0 | $0 |
| Conferences, conventions and meetingsLn 19 | $166K | $166K | $0 | $0 |
| Depreciation, depletion and amortizationLn 22 | $215 | $0 | $215 | $0 |
| InsuranceLn 23 | $1K | $0 | $1K | $0 |
| Other expenses (24a–d)Ln 24 | $35K | $30K | $688 | $5K |
| All other expensesLn 24e | $85K | $83K | $3K | $0 |
| Total functional expensesLn 25 | $780K | $583K | $154K | $42K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2025 Latest ViewingFiled with the IRS Jul 8, 2026 | $982K | $780K | $202K | $1.5M | 990 PDF |
| FY2024Filed with the IRS Jun 11, 2025 | $574K | $354K | $221K | $1.2M | 990 PDF |
| FY2023Filed with the IRS Jun 25, 2024 | $413K | $307K | $106K | $1.0M | 990 PDF |
| FY2022Filed with the IRS Jun 22, 2023 | $378K | $486K | −$108K | $912K | 990 PDF |
| FY2021Filed with the IRS May 23, 2022 | $461K | $184K | $277K | $1.0M | 990 PDF |
| FY2020Filed with the IRS Jun 28, 2021 | $340K | $126K | $213K | $742K | 990 PDF |
Schedules filed Part IV
See the full FY2025 990
Part I · Summary $982,449 revenue, 12 lines filed
Part VI · Governance 14 of 14 board members independent, 1 to look at
Part VIII · Statement of revenue $982,449 across 5 lines filed
Part IX · Statement of functional expenses $780,119 across 17 lines filed
Part X · Balance sheet $1,505,709 assets, 12 lines filed
Part XI · Reconciliation of net assets $1,474,873 net assets at year end
Form 990 e-file FY2025 from the IRS (about our sources) · Classification, formation year and address from the IRS Business Master File
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