Pennsylvania · Nonprofit
THE RYR-1 FOUNDATION
THE RYR-1 FOUNDATION (Pennsylvania) receives grants from 39 organizations whose IRS filings report $2,590,597 to it, the largest being The Schooner Foundation ($1,340,000). 23 of them have funded it in more than one year.
- Revenue FY2024
- $682k
- Funders on record
- 39
- Grants received
- $2.6M
- Net assets
- $2.7M
What The Ryr-1 Foundation does
Mission
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.
As stated on its FY2024 Form 990.
Programs
On its FY2024 return the organization reported starting a significant new program.
The Ryr-1 Foundation hosted two webinars that were new to the organization in the year. The first webinar was held on february 26, 2024 and discussed the rycal trial. The second webinar was held on october 22, 2024 and discussed the educational experiences of adolescents and children with ryr-1-rd. Both webinars were hosted with minimal costs.
Its own explanation, from Schedule O of that return (Part III, line 2).
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.
$146,984 spentof which $125,420 as grants75% of program spendingResearch 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.
$2,564 spent1% of program spendingFamily 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.
$11,160 spent6% of program spendingOther program services, not described on the e-filed return.
$34,477 spent$291 earned by the program18% of program spending
The 4 programs described on its FY2024 Form 990, listed largest first by expense. Program spending in total: $195,185.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2018 to 2019, from $1.5M to $1.9M (+26%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
Government-grant reliance: 2021 3%. Grants only. Government contracts and fees sit inside program revenue.
85% of THE RYR-1 FOUNDATION’s revenue is contributions — more donation-reliant than the typical peer (82% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 1 of the last 8 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Chief executive
Lindsay Goldberg
Executive director and patient liasion
Board chair
Michael Goldberg
Board president
As listed on its FY2024 Form 990.
The chief executive listed changed between the FY2023 and FY2024 filings.
Who funds it, year by year
2017 → 2023: the base broadened from 11 funders to 16 funders, grant income fell $921k → $183k.
11 of 39 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 25% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of THE RYR-1 FOUNDATION’s funders (the co-funder graph). Top 30 of 39 funders by total. Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
THE RYR-1 FOUNDATION leans on a few funders — its largest provides 52% of grant income and the top three 73%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
25% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund THE RYR-1 FOUNDATION.
Largest funder’s share by year: 2017 64% · 2018 81% · 2019 66% · 2020 25% · 2021 44% · 2022 50% · 2023 32% — diversifying over time.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
48% of THE RYR-1 FOUNDATION's funders are still giving 3 years after their first grant; 59% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
THE RYR-1 FOUNDATION draws 100% of its grant income from funders outside Pennsylvania, across 11 states in all.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $650k arriving through sponsors registered in 8 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
THE RYR-1 FOUNDATION runs a healthier operating margin than three-quarters of the 13,754 health nonprofits its size.
this organization peer median middle 50% of peers· 13,754 health nonprofits $100k–$1M, FY2024
Government funding THE RYR-1 FOUNDATION receives
Grants and contracts to this organization from federal (USASpending) and state checkbooks, reconciled to its EIN. $15k on record.
- Department of Health and Human Services$15k
Federal grants vs contracts are distinguished; state line items keep their reported category. Matched by name + geography (the BMF), so coverage is partial and precision-first.
Organizations like THE RYR-1 FOUNDATION
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In Pennsylvania
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
51% of spending goes to programs.
Governance
Public support
63%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 1 state
Screen this organization
A dated, signed PDF of the compliance screen for THE RYR-1 FOUNDATION: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds THE RYR-1 FOUNDATION?
- THE RYR-1 FOUNDATION (Pennsylvania) receives grants from 39 organizations whose IRS filings report $2,590,597 to it, the largest being The Schooner Foundation ($1,340,000). 23 of them have funded it in more than one year.
- How many funders does THE RYR-1 FOUNDATION have?
- IRS filings report 39 organizations giving $2,590,597 in grants to THE RYR-1 FOUNDATION, 23 of which have funded it in more than one year.
- Who is the largest funder of THE RYR-1 FOUNDATION?
- The Schooner Foundation is the largest funder on record, with $1,340,000 in grants. The full list of funders is on this page.
- How can an organization like THE RYR-1 FOUNDATION find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Pennsylvania. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2024 (financials across 2017–2024), and the filings of 39 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 14, 2026. What this page cannot tell you · view filing