Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in Mar 2018.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
78 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; $110K paid to officers and key staff.
Zollie Yavarow’s $110K as Employee is at the 84th 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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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 patients and funds research for VCP Disease.
Questions for Cure Vcp Disease INC
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Coordinating the VCP Research Network, hostinga patient registry, creating scientific models to share with scientists, and hosting the scientific focus group
We awarded two research grants 1.) to Genethon to investigate gene editing approaches in VCP iPSCs and 2.) through Uplifting Athletes for a young investigator
Supporting patients through genetic testing stipends, hosting support groups and educational webinars
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 | $411K | $468K |
| Total assetsLn 16 | $432K | $485K |
| LiabilitiesLn 26 | $6K | $13K |
| Net assetsLn 32 | $427K | $472K |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $10K | $10K | ||
| Grants and assistance to foreign recipientsLn 3 | $47K | $47K | ||
| Other salaries and wagesLn 7 | $129K | $110K | $19K | |
| Other employee benefitsLn 9 | $8K | $8K | ||
| Payroll taxesLn 10 | $10K | $9K | $2K | |
| Management feesLn 11a | $26K | $925 | $25K | |
| Legal feesLn 11b | $2K | $2K | ||
| Accounting feesLn 11c | $5K | $5K | ||
| Other fees for servicesLn 11g | $107K | $85K | $22K | |
| Advertising and promotionLn 12 | $4K | $4K | ||
| Office expensesLn 13 | $2K | $656 | $1K | |
| Information technologyLn 14 | $6K | $4K | $552 | $2K |
| TravelLn 17 | $352 | $352 | ||
| Conferences, conventions and meetingsLn 19 | $9K | $8K | $1K | |
| InsuranceLn 23 | $1K | $291 | $828 | $227 |
| Other expenses (24a–d)Ln 24 | $9K | $9K | $208 | $373 |
| All other expensesLn 24e | $1K | $800 | $350 | $52 |
| Total functional expensesLn 25 | $378K | $297K | $57K | $24K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2025 Latest Viewing | $424K | $378K | $45K | $472K | 990 PDF |
| FY2024 | $319K | $370K | −$51K | $427K | 990 PDF |
| FY2023 | $421K | $350K | $71K | $478K | 990 PDF |
| FY2022 | $326K | $261K | $65K | $407K | 990 PDF |
| FY2021 | $309K | $142K | $166K | $341K | 990 PDF |
| FY2020 | $107K | $175K | 990 PDF |
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Schedules filed Part IV
See the full FY2025 990 (6 parts)
Part I · Summary $423,616 revenue, 12 lines filed
Part VI · Governance 8 of 8 board members independent, 4 to look at
Part VIII · Statement of revenue $423,616 across 5 lines filed
Part IX · Statement of functional expenses $378,319 across 17 lines filed
Part X · Balance sheet $485,297 assets, 13 lines filed
Part XI · Reconciliation of net assets $472,041 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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