Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in Jan 2023.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
100 cents of each dollar spent went to programs.
Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.
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Who runs it and what they're paid
3 people listed on the 990.
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Questions the 990 asks
The form asks each of these directly. These are the filed answers.
- Family or business ties among officersPt VI · Ln 2Yes
- Top official's pay set by an independent reviewPt VI · Ln 15aNo
Programs and updates
Accelerate LHON cure research and improve lives of those affected.
Questions for Lhon Collective
Your first name shows with your question. Lhon Collective answers here, for everyone.
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Lhon collective worked with the milken foundation sparc to create an ongoing research in progress seminar series for researchers to discuss new and innovative scientific approaches to this rare disease and hear presentations from colleagues in the field to expand the working knowledge and collaborations for future scientific…
Lhon collective hosted an lhon conference as a part of the overall patient conference held with the united mitochondrial disease foundation. This brought 150 lhon community members together to learn about the most recent science for lhon, create community and build skills and independence for those newly vision impaired from lhon.
In partnership with carlisi creative, lhon collective developed audio-described, accessible educational video materials to scientifically explain lhon. These materials disseminate information to the community at large, including funders, the patient community and their family and friends, and to other clinician researchers to better…
Funders
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 | $105K | $206K |
| InvestmentsLn 11–13 | $12K | $54K |
| Total assetsLn 16 | $117K | $260K |
| LiabilitiesLn 26 | $0 | $0 |
| Net assetsLn 32 | $117K | $260K |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $172K | $172K | ||
| Information technologyLn 14 | $594 | $594 | ||
| Conferences, conventions and meetingsLn 19 | $4K | $4K | ||
| InsuranceLn 23 | $341 | $341 | ||
| Other expenses (24a–d)Ln 24 | $4K | $4K | $95 | |
| Total functional expensesLn 25 | $181K | $181K | $436 | $0 |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2025 Latest Viewing | $336K | $181K | $155K | $260K | 990 PDF |
| FY2024 | $219K | $110K | $110K | $117K | 990 PDF |
| FY2023 | $76K | $6K | 990 PDF |
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Schedules filed Part IV
See the full FY2025 990 (6 parts)
Part I · Summary $335,721 revenue, 12 lines filed
Part VI · Governance 0 of 3 board members independent, 2 to look at
Part VIII · Statement of revenue $335,721 across 5 lines filed
Part IX · Statement of functional expenses $181,097 across 5 lines filed
Part X · Balance sheet $259,796 assets, 6 lines filed
Part XI · Reconciliation of net assets $259,796 net assets at year end
Form 990 e-file (XML) FY2025 from the IRS · Classification, formation year and address from the IRS Business Master File
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