Utah · Nonprofit
TIMOTHY SYNDROME ALLIANCE INC
TIMOTHY SYNDROME ALLIANCE INC (Utah) receives grants from 4 organizations whose IRS filings report $6,515 to it, the largest being FIDELITY INVESTMENTS CHARITABLE GIFT FUND ($6,000). 1 of them have funded it in more than one year, and 93% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $107k
- Funders on record
- 4
- Grants received
- $7k
- Net assets
- $181k
What Timothy Syndrome Alliance Inc does
Mission
Our mission is to improve the diagnosis, treatment and care of individuals with cacna1c-related disorders, including timothy syndrome and longqt8, and to support the families and carers of those diagnosed.
As stated on its FY2025 Form 990-EZ.
Program
During the year, timothy syndrome foundation hosted family support conferences in september and october. The organization brought together approximately 25 families along with several physician and researcher speakers. These conferences provided a valuable opportunity for families to hear directly from medical professionals about the latest developments in treatment options and emerging areas of research. Families also had the opportunity to spend time with each other to talk and provide emotional support. The children had a chance to spend time with others like themselves and form meaningful bonds. As part of its commitment to equitable access, the organization covered expenses for several families, including travel, to ensure participation was not limited by financial or geographic barriers.
$8,282 spent100% of program spending
The program described on its FY2025 Form 990-EZ. Program spending in total: $8,282.
The organization over time
Each line starts at 100 in 2022, so what you read is the shape rather than the size: 150 means half as much again as 2022, 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 2024 to 2025, from $138k to $181k (+32%).
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.
99% of TIMOTHY SYNDROME ALLIANCE INC’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 4 reported years ran a deficit.
Who funds it, year by year
2022 → 2023: the base broadened from 1 funder to 3 funders, grant income rose $12 → $503.
2 of 4 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 93% 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 TIMOTHY SYNDROME ALLIANCE INC’s funders (the co-funder graph). 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
TIMOTHY SYNDROME ALLIANCE INC leans on a few funders — its largest provides 92% of grant income and the top three 99%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
93% 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 TIMOTHY SYNDROME ALLIANCE INC.
Largest funder’s share by year: 2022 100% · 2023 60% — 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.
Where its funders are
93% of TIMOTHY SYNDROME ALLIANCE INC's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $450 that is directly attributable, 100% of it comes from funders outside Utah, across 2 states.
Funder states come from each funder’s own filing. $6k arriving through sponsors registered in 2 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
TIMOTHY SYNDROME ALLIANCE INC runs a healthier operating margin than three-quarters of the 7,883 health nonprofits its size.
this organization peer median middle 50% of peers· 7,883 health nonprofits $100k–$1M, FY2025
Organizations like TIMOTHY SYNDROME ALLIANCE INC
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 Utah
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Footprint & structure
Files a return copy in 7 states
Screen this organization
A dated, signed PDF of the compliance screen for TIMOTHY SYNDROME ALLIANCE INC: 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 TIMOTHY SYNDROME ALLIANCE INC?
- TIMOTHY SYNDROME ALLIANCE INC (Utah) receives grants from 4 organizations whose IRS filings report $6,515 to it, the largest being FIDELITY INVESTMENTS CHARITABLE GIFT FUND ($6,000). 1 of them have funded it in more than one year, and 93% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does TIMOTHY SYNDROME ALLIANCE INC have?
- IRS filings report 4 organizations giving $6,515 in grants to TIMOTHY SYNDROME ALLIANCE INC, 1 of which have funded it in more than one year.
- Who is the largest funder of TIMOTHY SYNDROME ALLIANCE INC?
- FIDELITY INVESTMENTS CHARITABLE GIFT FUND is the largest funder on record, with $6,000 in grants. The full list of funders is on this page.
- How can an organization like TIMOTHY SYNDROME ALLIANCE INC find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Utah. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
Play a game about who funds Timothy Syndrome Alliance →
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2025 (financials across 2022–2025), and the filings of 4 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