The Ryr-1 Foundation
Public records show a registered, tax-exempt organization in good standing.
What it says it does
THE MISSION OF THE RYR-1 FOUNDATION IS TO SUPPORT RESEARCH LEADING TO AN EFFECTIVE TREATMENT OR A CURE FOR RYR-1-RELATED DISEASES THROUGH SUPPORTING RESEARCH, PROVIDING MEDICAL PROFESSIONAL EDUCATION, AND PATIENT & FAMILY SUPPORT AND ADVOCACY.
- Income
- $681,990
- Spending
- $384,333
- Spent on programs
- 51%
- Reserves
- 65.8 months of spending
- Largest source of income
- donations and private grants, 85%
- Employees
- 5
- Volunteers
- 2
- Highest pay
- $42,332, executive director and patient liasion
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Strong: 93 out of 100. Higher than 68% of charities in its peer group (medical research, $250k to $1m).
Reserves
35 of 35Spendable reserves would cover 65.8 months of spending.
Debt
20 of 20It owes 1% of what it owns.
Living within its means
15 of 15Income exceeded spending by 44% of income.
Income trend
15 of 15Income rose 14% on the year before.
Spending floor
8 of 1551% of spending went to programs and raising each dollar of donations cost 10 cents.
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Good: 83 out of 100. Higher than 64% of charities in its peer group (medical research, $250k to $1m).
Independent board
25 of 2511 of 12 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
8 of 8Has a written whistleblower policy.
Record keeping policy
0 of 7Reports no written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
0 of 10Did not give the board a copy of this return before filing it.
Pay set independently
5 of 5Sets its chief executive's pay through independent review and comparison.
Independent check of accounts
15 of 15Its accounts were audited by an independent accountant.
No reported misuse
10 of 10Reports no diversion of assets, excess benefits or loans to insiders.
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (3)
- $146,984 spent. 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.
- $2,564 spent. 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. THE WORKSHOP ORGANIZING COMMITTEE INCLUDES A DIVERSE GROUP OF RESEARCHERS/CLINICIANS IN RYR-1-RD, MEMBERS OF THE RYR-1 FOUNDATION'S SAB, AND RYR-1-RD COMMUNITY REPRESENTATIVES.
- $11,160 spent. 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.
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending December 2024.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since January 2017.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.
Could it be confused with another charity? Worth knowing.
A much larger organization has a similar name: The Foundation (Houston, TX), EIN 92-0742101. If that is the one you meant, check the EIN before giving.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.