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
76 cents of each dollar spent went to programs.
Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.
Something off? Claim to add context
Who runs it and what they're paid
12 people listed on the 990; $13K 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.
See The Ryr-1 Foundation executive salaries →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.
Questions for The Ryr-1 Foundation
Your first name shows with your question. The Ryr-1 Foundation answers here, for everyone.
Research Grants
The foundation makes grants to researchers interested in RYR-1 myopathy. As the only organization solely dedicated to RYR-1 myopathy, we promote research in this area.
Clinical Care Guidelines
What patients & families need to know about RYR-1-RELATED diseases - the RYR-1 foundation published the clinical care guidelines (CCG) in fall 2020. This handbook, made possible by a $50,000 grant from the oscar and elsa mayer family foundation, was written exclusively for individuals and families affected by RYR-1-RELATED diseases.
Patient Outreach and Education
The foundation raises awareness through resources on its website, including the latest medical literature, as well as direct meetings with physicians around the world. The foundation serves as a resource for patients and their families through its website, other forms of social media, and family conferences.
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, line by line.
Download 990
| Line | Start FY20 | End FY20 |
|---|---|---|
| Cash and savingsLn 1–2 | $1.5M | $936K |
| InvestmentsLn 11–13 | $349K | $1.0M |
| Total assetsLn 16 | $1.9M | $2.0M |
| LiabilitiesLn 26 | $21K | $2K |
| Net assetsLn 32 | $1.9M | $1.9M |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $105K | $105K | ||
| Grants and assistance to foreign recipientsLn 3 | $78K | $78K | ||
| Other salaries and wagesLn 7 | $53K | $22K | $25K | $6K |
| Payroll taxesLn 10 | $6K | $2K | $3K | $729 |
| Management feesLn 11a | $13K | $3K | $9K | $1K |
| Legal feesLn 11b | $11K | $9K | $2K | |
| Accounting feesLn 11c | $11K | $11K | ||
| Other fees for servicesLn 11g | $2K | $2K | $633 | |
| Advertising and promotionLn 12 | $4K | $3K | $62 | $898 |
| Office expensesLn 13 | $5K | $4K | $495 | |
| TravelLn 17 | $3K | $3K | ||
| InsuranceLn 23 | $3K | $3K | ||
| Other expenses (24a–d)Ln 24 | $34K | $27K | $6K | $418 |
| All other expensesLn 24e | $4K | $332 | $2K | $2K |
| Total functional expensesLn 25 | $330K | $252K | $66K | $13K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2024 LatestFiled with the IRS Nov 14, 2025 | $682K | $384K | $298K | $2.7M | 990 PDF |
| FY2023Filed with the IRS Nov 12, 2024 | $600K | $354K | $246K | $2.4M | 990 PDF |
| FY2022Filed with the IRS Nov 13, 2023 | $411K | $536K | −$125K | $2.1M | 990 PDF |
| FY2021Filed with the IRS Nov 15, 2022 | $520K | $258K | $262K | $2.2M | 990 PDF |
| FY2020 ViewingFiled with the IRS Nov 12, 2021 | $394K | $330K | $63K | $1.9M | 990 PDF |
Schedules filed Part IV
See the full FY2020 990 (6 parts)
Part I · Summary $393,570 revenue, 12 lines filed
Part VI · Governance 12 of 13 board members independent, 3 to look at
Part VIII · Statement of revenue $393,570 across 9 lines filed
Part IX · Statement of functional expenses $330,396 across 14 lines filed
Part X · Balance sheet $1,951,506 assets, 14 lines filed
Part XI · Reconciliation of net assets $1,949,413 net assets at year end
Form 990 e-file (XML) FY2020 from the IRS · Classification, formation year and address from the IRS Business Master File
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