Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2025. IRS ruling in Jan 2015.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Who runs it and what they're paid
9 people listed on the 990-EZ.
Valerie Pappas Llauro’s $44K as Executive Di is at the 29th 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.
Compensation history total reportable pay by year · 2 named individuals · Part VII
| Name | FY2025 | FY2024 | FY2023 |
|---|---|---|---|
| Valerie Pappas Llauro | $43,500 | $24,000 | — |
| Valerie Lauro | — | — | $4,831 |
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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Programs and updates
Funds research for a Duchenne's muscular dystrophy cure and supports affected families.
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Awarded various families with a DMD afflicted child. Funds went to various devices to assist with the care of their children.
Awarded university of california (ucla) to fund DMD research.
Various educational programs and activities regarding DMD.
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-EZ, line by line.
Download 990
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2025 Latest | $323K | $289K | $34K | $309K | 990 PDF |
| FY2024 | $279K | $229K | $50K | $273K | 990 PDF |
| FY2023 | $86K | $222K | 990 PDF | ||
| FY2022 | $496K | $218K | $278K | $278K | 990 PDF |
| FY2021 Viewing | $70K | $115K | 990 PDF | ||
| FY2020 | $49K | $162K | 990 PDF | ||
| FY2019 | $283K | $218K | $64K | $343K | 990 PDF |
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Schedules filed Part IV
Form 990 e-file (XML) FY2021 from the IRS · Classification, formation year and address from the IRS Business Master File
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