Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2024. IRS ruling in Jan 2017.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
51 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
14 people listed on the 990; $42K paid to officers and key staff.
Lindsay Goldberg’s $42K as Executive Director and Patient Liasion is at the 30th percentile of top reported officer pay among 328 $100K–1M medical research 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 | FY2024 | FY2023 | FY2021 | FY2020 |
|---|---|---|---|---|
| Lindsay Goldberg | $42,332 | $21,835 | $13,973 | $12,795 |
| John Gallo | — | $41,150 | — | — |
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 15aYes
Programs and updates
Fund research, educate doctors, and support patients for RYR-1 diseases.
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Research Grants
The foundation makes grants to researchers interested in RYR-1-RELATED diseases (RYR-1-RD). As the only organization solely dedicated to RYR-1-RD, we promote research in this area.
Family Conference
The organization periodically hosts family conferences. These conferences are unique opportunities for affected individuals and families to meet physicians and scientists who specialize in RYR-1-RD, learn about RYR-1-RD, form friendships and develop a true RYR-1-RD community.
Research Workshop
The patient-led international research workshop is devoted exclusively to RYR-1-RELATED diseases. This workshop provide a much-needed forum for the leading international RYR-1-RD experts and a group of affected individuals to share knowledge, exchange ideas, form collaborations, and develop new strategies for finding therapies.
Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2024 990, line by line.
Download 990
| Line | Start FY24 | End FY24 |
|---|---|---|
| Cash and savingsLn 1–2 | $336K | $405K |
| InvestmentsLn 11–13 | $2.0M | $2.3M |
| Total assetsLn 16 | $2.4M | $2.7M |
| LiabilitiesLn 26 | $5K | $25K |
| Net assetsLn 32 | $2.4M | $2.7M |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $32K | $32K | ||
| Grants and assistance to foreign recipientsLn 3 | $93K | $93K | ||
| Other salaries and wagesLn 7 | $160K | $42K | $68K | $50K |
| Pension plan contributionsLn 8 | $5K | $5K | ||
| Payroll taxesLn 10 | $14K | $4K | $6K | $4K |
| Legal feesLn 11b | $3K | $894 | $2K | $195 |
| Accounting feesLn 11c | $19K | $19K | ||
| Other fees for servicesLn 11g | $256 | $13 | $226 | $17 |
| Advertising and promotionLn 12 | $4K | $3K | $371 | $600 |
| Office expensesLn 13 | $13K | $377 | $13K | |
| TravelLn 17 | $1K | $1K | ||
| InsuranceLn 23 | $13K | $13K | ||
| Other expenses (24a–d)Ln 24 | $18K | $14K | $3K | $1K |
| All other expensesLn 24e | $7K | $4K | $2K | $1K |
| Total functional expensesLn 25 | $384K | $195K | $132K | $57K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2024 Latest Viewing | $682K | $384K | $298K | $2.7M | 990 PDF |
| FY2023 | $600K | $354K | $246K | $2.4M | 990 PDF |
| FY2022 | $411K | $536K | −$125K | $2.1M | 990 PDF |
| FY2021 | $520K | $258K | $262K | $2.2M | 990 PDF |
| FY2020 | $394K | $330K | $63K | $1.9M | 990 PDF |
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Schedules filed Part IV
See the full FY2024 990 (4 parts)
Part VIII · Statement of revenue $681,990 across 6 lines filed
Part IX · Statement of functional expenses $384,333 across 14 lines filed
Part X · Balance sheet $2,731,932 assets, 12 lines filed
Part XI · Reconciliation of net assets $2,706,827 net assets at year end
Form 990 e-file (XML) FY2024 from the IRS · Classification, formation year and address from the IRS Business Master File
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