New York · Nonprofit
KIF1AORG INC
KIF1AORG INC (New York) receives grants from 18 organizations whose IRS filings report $884,798 to it, the largest being Silicon Valley Community Foundation ($615,000). 8 of them have funded it in more than one year, and 84% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2025
- $1.9M
- Funders on record
- 18
- Grants received
- $885k
- Net assets
- $1.6M
What Kif1aorg Inc does
Mission
Kif1a.org is a global community dedicated to improving the lives of those affected by kif1a-associated neurological disorders and accelerating research to find a cure.
As stated on its FY2025 Form 990.
Programs
Medical research and development - kif1a.org's medical research and development program accelerates discovery and therapeutic development for kif1a associated neurological disorder (kand) by driving scientific collaboration and patient-centered research. Led by our chief science officer, this program facilitates coordination among researchers, clinicians, and institutions around the world to align efforts, share data and resources, and advance understanding of kif1a-related symptoms. Through strategic partnerships, research grants, and convening global experts, the program helps identify and prioritize high-impact research projects. Importantly, kif1a.org ensures that the patient and caregiver perspective remains central in all scientific discussions, from basic research to clinical trial design. By bridging the gap between families and the scientific community, the medical research and development program fosters a collaborative ecosystem dedicated to delivering meaningful outcomes for those affected by kand.
$141,985 spent40% of program spendingFamily & scientific engagement conference - kif1a.org hosts a biennial family and scientific engagement conference to unite the global kand community-including patients, families, researchers, clinicians, and industry partners-for a collaborative exchange of knowledge, research updates, and lived experiences. This flagship event fosters meaningful connections, drives cross-disciplinary collaboration, and amplifies the patient voice in the search for treatments and a cure. Our most recent 2023 event and laid critical groundwork for the 2025 gathering. We held our 2025 conference in july with 345 total attendance (222 in person and 123 virtual) reflecting 136% increase since our last convening. Ongoing activities included follow-up sessions, planning meetings, community feedback initiatives, and speaker coordination. These efforts ensure the conference remains a powerful catalyst for research progress and a vital source of support and empowerment for families affected by kand.
$124,606 spentof which $808 as grants$7,990 earned by the program35% of program spendingCommunity & family support - kif1a.org's community and family support program empowers individuals affected by kif1a associated neurological disorder (kand) through direct support, resource development, and family-centered initiatives. This program provides a vital support network for patients, caregivers, and advocates navigating the challenges of a rare neurodegenerative disease. Through virtual meetups, educational webinars, personalized family outreach, and an online community platform, kif1a.org fosters meaningful connections among families around the world. The program also provides guidance on clinical care, access to research opportunities, and emotional support resources. By amplifying the voices of patients and caregivers, the community and family support program helps build resilience, reduce isolation, and ensure that every kand family is equipped with the tools and information needed to face the complex realities of this ultra-rare disorder.
$56,131 spentof which $5,500 as grants16% of program spendingReimbursement other programs - general and conference attendance.
$36,382 spentof which $391 as grants10% of program spending
The 4 programs described on its FY2025 Form 990, listed largest first by expense. Program spending in total: $359,104.
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 2024 to 2025, from $218k to $1.6M (+647%).
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.
97% of KIF1AORG INC’s revenue is contributions — more reliant on donations than three-quarters of its peers (51% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 3 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
Dominique Lessard
Executive director
Board chair
Angie Fuller
Chairperson, treasurer
As listed on its FY2025 Form 990.
Who funds it, year by year
2017 → 2023: the base broadened from 2 funders to 4 funders, grant income rose $15k → $32k.
8 of 18 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 84% 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 KIF1AORG 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
KIF1AORG INC leans on a few funders — its largest provides 70% of grant income and the top three 80%; half comes from just 1 funder.
the vertical line marks half of all grant income — 1 funder to its left
87% 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 KIF1AORG INC.
Largest funder’s share by year: 2017 67% · 2018 66% · 2019 100% · 2020 96% · 2021 52% · 2022 69% · 2023 50% — 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
0% of KIF1AORG INC's funders are still giving 3 years after their first grant; 44% 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
84% of KIF1AORG 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 $139k that is directly attributable, 100% of it comes from funders outside New York, across 8 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $746k 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
KIF1AORG INC runs a healthier operating margin than three-quarters of the 5,002 health nonprofits its size.
this organization peer median middle 50% of peers· 5,002 health nonprofits $1M–$10M, FY2025
Organizations like KIF1AORG 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 New York
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
79% of spending goes to programs.
Governance
Public support
97%
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 KIF1AORG 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 KIF1AORG INC?
- KIF1AORG INC (New York) receives grants from 18 organizations whose IRS filings report $884,798 to it, the largest being Silicon Valley Community Foundation ($615,000). 8 of them have funded it in more than one year, and 84% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does KIF1AORG INC have?
- IRS filings report 18 organizations giving $884,798 in grants to KIF1AORG INC, 8 of which have funded it in more than one year.
- Who is the largest funder of KIF1AORG INC?
- 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 KIF1AORG INC find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in New York. 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 2018–2025), and the filings of 18 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