Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in May 2020.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Who runs it and what they're paid
4 people listed on the 990-EZ.
Shira Johnson’s $42K as Executive Director is at the 28th 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.
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Programs and updates
Accelerating research and treatment for CACNA1A patients through collaboration and awareness.
Questions for Cacna1a Foundation INC
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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 FY2020 990-EZ, line by line.
Download 990
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2025 Latest | $710K | $390K | $320K | $930K | 990 PDF |
| FY2024 | $466K | $540K | −$75K | $611K | 990 PDF |
| FY2023 | $386K | $454K | −$68K | $685K | 990 PDF |
| FY2022 | $343K | $403K | −$60K | $753K | 990 PDF |
| FY2021 | $485K | $169K | $316K | $488K | 990 PDF |
| FY2020 Viewing | $193K | $172K | 990 PDF |
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Schedules filed Part IV
Form 990 e-file (XML) FY2020 from the IRS · Classification, formation year and address from the IRS Business Master File
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