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
74 cents of each dollar spent went to programs.
Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.
Who runs it and what they're paid
10 people listed on the 990; $204K 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.
Research Network Capacity Building
We were awarded a chan zuckerberg initiative rare as one grant in 2022 (the third and final year of the grant). This grant was for capacity building and focused mostly on growing our research network to over 140 researchers and clinicians.
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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 FY2022 990, line by line.
Download 990
| Line | Start FY22 | End FY22 |
|---|---|---|
| Cash and savingsLn 1–2 | $303K | $267K |
| Total assetsLn 16 | $764K | $267K |
| LiabilitiesLn 26 | $0 | $0 |
| Net assetsLn 32 | $764K | $267K |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $297K | $297K | ||
| Grants to domestic individualsLn 2 | $7K | $7K | ||
| Other salaries and wagesLn 7 | $215K | $215K | ||
| Other employee benefitsLn 9 | $13K | $13K | ||
| Payroll taxesLn 10 | $17K | $17K | ||
| Other fees for servicesLn 11g | $417K | $414K | $3K | |
| Advertising and promotionLn 12 | $3K | $3K | ||
| Office expensesLn 13 | $29K | $12K | $17K | |
| Conferences, conventions and meetingsLn 19 | $38K | $37K | $2K | |
| Other expenses (24a–d)Ln 24 | $19K | $19K | $0 | $0 |
| Total functional expensesLn 25 | $1.1M | $785K | $270K | $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 Viewing | $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 FY2022 990 (4 parts)
Part VIII · Statement of revenue $557,417 across 9 lines filed
Part IX · Statement of functional expenses $1,054,287 across 10 lines filed
Part X · Balance sheet $267,063 assets, 7 lines filed
Part XI · Reconciliation of net assets $267,063 net assets at year end
Form 990 e-file (XML) FY2022 from the IRS · Classification, formation year and address from the IRS Business Master File
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