Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2024. IRS ruling in Mar 2017.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
73 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
9 people listed on the 990; $107K paid to officers and key staff.
Dylan Verden’s $66K as Chief Science Officer is at the 53rd percentile of top reported officer pay among 2095 $100K–1M mental health 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 · 6 named individuals · Part VII
| Name | FY2023 | FY2022 | FY2021 | FY2020 |
|---|---|---|---|---|
| Dominique Lessard | $41,727 | $84,696 | $76,483 | $33,843 |
| Dylan Verden | $65,744 | — | — | — |
| Dylan Verden Ph D | — | $53,903 | — | — |
| Kathryn Atchley | — | $41,876 | $48,232 | $45,284 |
| Charlotte Klinepeter | — | $16,840 | — | — |
| Michelle Tao | — | $6,690 | — | — |
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.
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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
Supports KAND patients and funds research for a cure.
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Research and Development
KIF1A.ORG powers collaborative and translational research to rapidly discover treatment for kand. KIF1A.ORG manages several programs to de-risk and accelerate therapeutic development, including the KIF1A research network, direct research funding, and open-access tools for development, such as natural history data, disease models, and…
Kand Family and Scientific Engagement Conference
KIF1A.ORG hosted the 2023 kand family & scientific engagement conference in new york city, ny from august 3-6, 2023. These conferences bring together KIF1A.ORG community members in one setting including patients, families, scientists, clinicians, biotech leaders, and supporters.
Other Programs
General, community and family support, conference attendance and koala travel reimbursement
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Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2023 990, line by line.
Download 990
| Line | Start FY23 | End FY23 |
|---|---|---|
| Cash and savingsLn 1–2 | $267K | $73K |
| Total assetsLn 16 | $267K | $73K |
| LiabilitiesLn 26 | $0 | $0 |
| Net assetsLn 32 | $267K | $73K |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $126K | $126K | ||
| Grants to domestic individualsLn 2 | $2K | $2K | ||
| Grants and assistance to foreign recipientsLn 3 | $2K | $2K | ||
| Pay of current officers, directors and key staffLn 5 | $107K | $24K | $82K | $1K |
| Other employee benefitsLn 9 | $8K | $8K | ||
| Payroll taxesLn 10 | $9K | $2K | $7K | $98 |
| Legal feesLn 11b | $318 | $318 | ||
| Accounting feesLn 11c | $5K | $5K | ||
| Lobbying feesLn 11d | $0 | |||
| Other fees for servicesLn 11g | $32K | $31K | $994 | |
| Advertising and promotionLn 12 | $18K | $18K | ||
| Office expensesLn 13 | $9K | $2K | $8K | |
| TravelLn 17 | $5K | $5K | $28 | |
| Conferences, conventions and meetingsLn 19 | $101K | $97K | $4K | |
| Total functional expensesLn 25 | $424K | $308K | $111K | $5K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2024 Latest | $295K | $149K | $145K | $218K | 990 PDF |
| FY2023 Viewing | $229K | $424K | −$194K | $73K | 990 PDF |
| FY2022 | $557K | $1.1M | −$497K | $267K | 990 PDF |
| FY2021 | $816K | $557K | $259K | $764K | 990 PDF |
| FY2020 | $741K | $302K | $440K | $505K | 990 PDF |
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Schedules filed Part IV
See the full FY2023 990 (4 parts)
Part VIII · Statement of revenue $229,470 across 9 lines filed
Part IX · Statement of functional expenses $423,665 across 14 lines filed
Part X · Balance sheet $72,868 assets, 7 lines filed
Part XI · Reconciliation of net assets $72,868 net assets at year end
Form 990 e-file (XML) FY2023 from the IRS · Classification, formation year and address from the IRS Business Master File
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