Kentucky · Nonprofit
CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND
CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND (Kentucky) receives grants from 10 organizations whose IRS filings report $1,131,191 to it, the largest being Silicon Valley Community Foundation ($1,000,000). 4 of them have funded it in more than one year, and 99% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $454k
- Funders on record
- 10
- Grants received
- $1.1M
- Net assets
- $319k
What Chelseas Hope Lafora Children Research Fund does
Mission
The mission of Chelsea's Hope is to improve the lives of those affected by Lafora disease and to help accelerate the development of treatments. We do this by raising awareness, hosting educational events, and supporting research efforts for Lafora disease.
As stated on its FY2025 Form 990.
Programs
On its FY2025 return the organization reported starting a significant new program and a significant change in how it conducts a program.
We created a program for Family Support Services and we added an awareness event.
Its own explanation, from Schedule O of that return (Part III, line 2).
We completed our Biomarker and Repurposed Drug screening program in 2024.
Its own explanation, from Schedule O of that return (Part III, line 3).
Funding a Clinical Safety Study: Our organization provided grants in total of $310,000 to the University of Texas Southwestern Medical Center to fund their FDA-approved safety study for ION283, a drug with the potential to treat patients with Lafora Disease. Our efforts ensured that enough funds were available to enroll all 10 patients in the study.
$310,000 spentof which $310,000 as grants66% of program spendingFamily Support Services: Our staff and interns receive compensation in order to provide families with a variety of support resources. In 2025, we hosted 16 committee meetings to plan outreach, financing, and family support projects, sent 14 newsletter communications, produced 2 publications and 5 research simplifications, surveyed priorities of over 60 families through our caregiver registry, connected more than 30 families through regular family support meetings, and hosted 15 virtual workshops to identify biomarkers and clinical best practices for treating Lafora. Our organization also maintains software and website subscriptions to disseminate these resources.
$110,581 spent24% of program spendingAnnual Lafora Science Symposium: Our organization hosts an annual science symposium that brings together families, scientists, clinicians, patient advocates, and industry representatives to accelerate the development of therapies for Lafora disease. We hosted 101 in-person and 193 virtual participants for our 3-day event in Valencia.
$47,423 spent10% of program spendingLafora awareness event for rare disease day
$299 spent0% of program spending
The 4 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $468,303.
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 2023 to 2024, from $782k to $360k (−54%).
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.
100% of CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND’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. 3 of the last 6 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
Katherine Donohue
Finance Director & Executive Director (Top Management)
As listed on its FY2025 Form 990.
Who funds it, year by year
2019 → 2023: the base broadened from 1 funder to 2 funders, grant income rose $6k → $11k.
7 of 10 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 99% 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 CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND’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
CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND leans on a few funders — its largest provides 88% of grant income and the top three 96%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
100% 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 CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND.
Largest funder’s share by year: 2019 100% · 2020 50% · 2021 97% · 2022 74% · 2023 95% — 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
50% of CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND's funders are still giving 2 years after their first grant; 40% 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
99% of CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND'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 $6k that is directly attributable, 100% of it comes from funders outside Kentucky, across 3 states.
Funder states come from each funder’s own filing. $1.1M arriving through sponsors registered in 6 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
CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND has grown faster 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 CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND
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 Kentucky
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
95% of spending goes to programs.
Governance
Public support
81%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 39 states
Screen this organization
A dated, signed PDF of the compliance screen for CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND: 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 CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND?
- CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND (Kentucky) receives grants from 10 organizations whose IRS filings report $1,131,191 to it, the largest being Silicon Valley Community Foundation ($1,000,000). 4 of them have funded it in more than one year, and 99% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND have?
- IRS filings report 10 organizations giving $1,131,191 in grants to CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND, 4 of which have funded it in more than one year.
- Who is the largest funder of CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND?
- Silicon Valley Community Foundation is the largest funder on record, with $1,000,000 in grants. The full list of funders is on this page.
- How can an organization like CHELSEAS HOPE LAFORA CHILDREN RESEARCH FUND find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Kentucky. 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 FY2025 (financials across 2017–2025), and the filings of 10 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