Minnesota · Nonprofit
THE YAYA FOUNDATION FOR 4H LEUKODYSTOPHY
THE YAYA FOUNDATION FOR 4H LEUKODYSTOPHY (Minnesota) receives grants from 16 organizations whose IRS filings report $1,229,425 to it, the largest being Silicon Valley Community Foundation ($615,000). 8 of them have funded it in more than one year, and 90% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2024
- $284k
- Funders on record
- 16
- Grants received
- $1.2M
- Net assets
- $293k
What The Yaya Foundation for 4h Leukodystophy does
Mission
Founded and launched the 4H Leukodystrophy Collaboration Network (4HLCN), a global, cross-functional collaboration of patients, families, researchers, and clinicians dedicated to advancing therapeutic discovery that will enable people affected by 4H (POLR3-Related) Leukodystrophy to live longer, better lives.
As stated on its FY2024 Form 990.
Programs
Launched #4HLFamilies, comprised of programming and supportive resources for families affected by 4H Leukodystrophy. #4HLFamilies aims to connect affected families so that they can share experiences and best practices and provide emotional and educational support for one another, provide educational resources for families and their healthcare providers in order to streamline and improve the standard of care for patients affected by 4H Leukodystrophy, and to share patient stories to raise awareness of the disease. The Yaya Foundation held several videoconferences attended by families and children affected by 4H and began creation of a suite of educational resources for newly diagnosed families and their healthcare providers aimed at streamlining and improving their care.
$156,779 spent64% of program spendingFounded and launched the 4H Leukodystrophy Collaboration Network (4HLCN), a global, cross-functional collaboration of patients, families, researchers, and clinicians dedicated to advancing therapeutic discovery that will enable people affected by 4H (POLR3-Related) Leukodystrophy to live longer, better lives.
$87,512 spent36% of program spending
The 2 programs described on its FY2023 Form 990, listed largest first by expense. Program spending in total: $244,291.
The organization over time
Each line starts at 100 in 2018, so what you read is the shape rather than the size: 150 means half as much again as 2018, 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 2019 to 2020, from $216k to $715k (+230%).
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.
90% of THE YAYA FOUNDATION FOR 4H LEUKODYSTOPHY’s revenue is contributions — more donation-reliant than the typical peer (83% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 2 of the last 7 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
Benjamin Smith
Executive Director
As listed on its FY2024 Form 990.
Who funds it, year by year
2019 → 2023: the base broadened from 4 funders to 10 funders, grant income fell $119k → $97k.
12 of 16 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 90% 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 YAYA FOUNDATION FOR 4H LEUKODYSTOPHY’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
THE YAYA FOUNDATION FOR 4H LEUKODYSTOPHY leans on a few funders — its largest provides 50% of grant income and the top three 77%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
91% 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 YAYA FOUNDATION FOR 4H LEUKODYSTOPHY.
Largest funder’s share by year: 2019 85% · 2020 98% · 2021 43% · 2022 73% · 2023 15% — 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
33% of THE YAYA FOUNDATION FOR 4H LEUKODYSTOPHY's funders are still giving 3 years after their first grant; 50% 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
90% of THE YAYA FOUNDATION FOR 4H LEUKODYSTOPHY'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 $124k that is directly attributable, 93% of it comes from Minnesota funders.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $1.1M arriving through sponsors registered in 10 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 YAYA FOUNDATION FOR 4H LEUKODYSTOPHY is better cushioned than half of the 13,769 health nonprofits its size.
this organization peer median middle 50% of peers· 13,769 health nonprofits $100k–$1M, FY2024
Organizations like THE YAYA FOUNDATION FOR 4H LEUKODYSTOPHY
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 Minnesota
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
50% of spending goes to programs.
Governance
Public support
99%
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 YAYA FOUNDATION FOR 4H LEUKODYSTOPHY: 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 YAYA FOUNDATION FOR 4H LEUKODYSTOPHY?
- THE YAYA FOUNDATION FOR 4H LEUKODYSTOPHY (Minnesota) receives grants from 16 organizations whose IRS filings report $1,229,425 to it, the largest being Silicon Valley Community Foundation ($615,000). 8 of them have funded it in more than one year, and 90% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does THE YAYA FOUNDATION FOR 4H LEUKODYSTOPHY have?
- IRS filings report 16 organizations giving $1,229,425 in grants to THE YAYA FOUNDATION FOR 4H LEUKODYSTOPHY, 8 of which have funded it in more than one year.
- Who is the largest funder of THE YAYA FOUNDATION FOR 4H LEUKODYSTOPHY?
- Silicon Valley Community Foundation is the largest funder on record, with $615,000 in grants. The full list of funders is on this page.
- How can an organization like THE YAYA FOUNDATION FOR 4H LEUKODYSTOPHY find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Minnesota. 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 2018–2024), and the filings of 16 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 22, 2026. What this page cannot tell you · view filing