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
92 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; $125K 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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KAND is a neurodegenerative disorder caused by mutations in the KIF1A gene and causes a constellation of medical challenges, including spastic paraplegia, epilepsy, intellectual disability, optic nerve atrophy, cerebellar atrophy, peripheral neuropathy, and autism.
KIF1A.ORG hosted the virtual 2021 KAND Family & Scientific Engagement Conference on July 9th and 10th to share the latest advancements in research and therapeutic development. KAND patients, family members, researchers, clinicians, and advocates came together at this virtual conference as one community united by our mission to improve…
Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2021 990, line by line.
Download 990
| Line | Start FY21 | End FY21 |
|---|---|---|
| Cash and savingsLn 1–2 | $505K | $764K |
| Total assetsLn 16 | $505K | $764K |
| LiabilitiesLn 26 | $0 | $0 |
| Net assetsLn 32 | $505K | $764K |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $57K | $57K | ||
| Grants to domestic individualsLn 2 | $1K | $1K | ||
| Grants and assistance to foreign recipientsLn 3 | $68K | $68K | ||
| Pay of current officers, directors and key staffLn 5 | $125K | $112K | $13K | |
| Other salaries and wagesLn 7 | $27K | $9K | $18K | |
| Other employee benefitsLn 9 | $6K | $5K | $1K | |
| Payroll taxesLn 10 | $13K | $12K | $1K | |
| Other fees for servicesLn 11g | $220K | $217K | $3K | |
| Office expensesLn 13 | $237 | $237 | ||
| Information technologyLn 14 | $8K | $3K | $4K | |
| Conferences, conventions and meetingsLn 19 | $29K | $29K | ||
| Other expenses (24a–d)Ln 24 | $3K | $418 | $3K | |
| Total functional expensesLn 25 | $557K | $514K | $43K | $0 |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2024 Latest | $295K | $149K | $145K | $218K | 990 PDF |
| FY2023 | $229K | $424K | −$194K | $73K | 990 PDF |
| FY2022 | $557K | $1.1M | −$497K | $267K | 990 PDF |
| FY2021 Viewing | $816K | $557K | $259K | $764K | 990 PDF |
| FY2020 | $741K | $302K | $440K | $505K | 990 PDF |
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Schedules filed Part IV
See the full FY2021 990 (4 parts)
Part VIII · Statement of revenue $816,181 across 4 lines filed
Part IX · Statement of functional expenses $557,217 across 12 lines filed
Part X · Balance sheet $763,933 assets, 7 lines filed
Part XI · Reconciliation of net assets $763,933 net assets at year end
Form 990 e-file (XML) FY2021 from the IRS · Classification, formation year and address from the IRS Business Master File
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