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International Foundation For CDKL5 Research at a glanceAlso receives grants: funding profile →

· Public charity

International Foundation For CDKL5 Research

To fund research aimed at finding a cure for CDKL5, a rare genetic disorder.

$121k
Granted FY2024still arriving
4
Grants FY2024still arriving
3
States reached
$56k
Largest
01What it fundsRead
02The needRead
03Its granteesRead
04Its fieldRead
05Through PlinthRead
01What it funds
01100% classified

What it funded, over time

Every grant placed by its stated purpose and the recipient’s mission, by year, FY2017 to 2024.

Health$1.7MEducation$715kScience & Tech$221k
02FY2024 · 4 grants

Where the money goes

Grants by size, and the largest recipients.

By grant size · FY2024

  • $10k–50k2 grants · $43k
  • $50k–250k2 grants · $106k
$50,000
Median grant
3
States reached
$977k
Total assets
Largest grants
RecipientAmount
University of Oregon$55,874
Children's Hospital Philadelphia$50,000
Washington University School of Medicine$30,000
Orphan Disease Center at University of Pennsylvania$13,400
02The need
03

Does the money reach high-need areas?

Each grant placed by the hardship in its grantee’s ZIP, against the area’s typical level.

show:

Dollar for dollar, its grants (FY17–24) land where the poverty rate runs at 17%, against an area that typically sits at 14%. 71% of its dollars go to grantees based in above-average-need neighborhoods. Most of its grants land in higher-need ZIPs.

area typical 14%Boston Children's Hospital: $188k → 16%University of Pennsylvania: $190k → 22%NYU School of Medicine: $60k → 17%Baylor College of Medicine: $105k → 16%Washington University School of Medicine: $65k → 21%University of Oregon: $56k → 15%Vanderbilt University Medical Center: $35k → 14%Childrens Hospital Colorado: $39k → 10%University of Colorado: $270k → 12%Cleveland Clinic Foundation: $25k → 17%Hugh Moser Research Institute: $18k → 19%Boston Children's Hospital: $73k → 16%Trustees University of Pennsylvania: $100k → 22%NYU School of Medicine: $25k → 17%Baylor College of Medicine: $50k → 16%Washington University School of Medicine: $30k → 21%Childrens Hospital Colorado: $39k → 10%University of Colorado: $154k → 12%Boston Children's Hospital: $68k → 16%Childrens Hospital Philadelphia: $91k → 22%Baylor College of Medicine: $22k → 16%Washington University School of Medicine: $25k → 21%University of Colorado: $76k → 12%Boston Children's Hospital: $68k → 16%Childrens Hospital Philadelphia: $91k → 22%Washington University School of Medicine: $20k → 21%University of Colorado: $50k → 12%Boston Children's Hospital: $45k → 16%University of Pennsylvania: $85k → 22%University of Colorado: $8k → 12%Children's Hospital Philadelphia: $50k → 22%Children's Hospital Philadelphia: $50k → 22%Children's Hospital Philadelphia: $50k → 22%Orphan Disease Center at University of Pennsylvania: $13k → 22%Orphan Disease Center at University of Pennsylvania: $10k → 22%University of Pennsylvania: $9k → 22%0%20%40%50%more need →
grant to an above-average-need area below average· circle size = grant amount
How this is measured
Matched: human-services grants are those whose grantee’s IRS cause code is Human Services. Placed by people below the poverty line in the grantee’s ZIP, averaged from the tracts in that ZIP.

Which US states its grants reach

NY
MA
OR
OH
PA
CA
CO
NE
MO
MD
TN
TX
How this is measured
US grants placed by each grantee’s ZIP, which can differ from where services are delivered. Need from public data (U.S. Census/ACS, CDC PLACES, Eviction Lab, USDA), shown as context about the area, never attributed to the funder’s giving.
03Its grantees
repeat funding

Who it funds again

Organizations funded in more than one year, against those funded once.

86%of every dollar goes to organizations it has funded before.
$1.9M · 9 repeat orgs$317k to everyone else

Grantees it renews have grown median revenue +62% since the first grant, against +25% for those funded once.

9 repeat relationships: 2 still active in FY2024, 7 since wound down; 1 grantees were first funded in FY2024 (too recent to call).

How the two cohorts compare

Re-uppedFunded once

Organizations

9
6

Total granted

$1.9M
$261k

Median revenue growth · since first grant

+62%
+25%

Still filing today

67%
100%

New vs renewed · share of each year

In FY2024, 59% of grant dollars renewed an existing relationship; $56k went to new ones.

50%100%’17’18’19’20’21’22’23’24
RenewedFirst-time

Where new relationships form · theme of each grantee’s first grant

’17’18’19’20’21’22’23’24
HealthEducationPhilanthropyOther
How this is measured
First-time means a grantee’s first year in the filing window; renewed means funded in an earlier year too. The renewed share climbs naturally as a portfolio matures, so the signal is a year that bucks it (a wave of new grantees). The earliest year is left-censored: relationships that predate the data read as new. Theme is the grantee’s IRS cause.

Backed again, and grew

  • CH
    CHILDREN'S HOSPITAL
    5× · 2018–2023 · $441k · revenue +62%
  • TC
    THE CHILDREN'S HOSPITAL OF PHILADELPHIA FOUNDATION
    3× · 2019–2022 · $233k · revenue +148%
  • BC
    Baylor College of Medicine
    3× · 2019–2022 · $177k · revenue +47%

Funded once

  • CH
    Children's Hospital Colorado Foundation
    one grant, 2022 · $98k · revenue -10%
  • NL
    NYU LANGONE HEALTH SYSTEMgraduated
    one grant, 2018 · $60k · revenue +94%
  • VU
    Vanderbilt University Medical Centergraduated
    one grant, 2023 · $35k · revenue +25%
How this is measured

Repeat means funded in two or more distinct years. Growth and survival are read from each grantee’s own subsequent IRS filings.

04Its field

Closest unfunded matches

The nonprofits that most resemble its grantees but are not funded by it, scored along the direction from the rest of the field toward the portfolio. A resemblance in what they say they do, not a recommendation.

1
New York University

Nyu is a private university with approximately 60,000 matriculating students in 20 schools and institutes. nyu's primary missions are education, research and scholarship, and patient care.

Education
2
The Johns Hopkins Hospital

For more than 125 years, the mission of the johns hopkins hospital has been to lead the world in the diagnosis and treatment of disease and to train tomorrow's great physicians, nurses and scientists. above all, we aim to provide the…

Health
3
Rush University Medical Center

The mission of Rush is to improve the health of the individuals and diverse communities we serve through the integration of outstanding patient care, education, research and community partnerships.

Health
4
University of Minnesota Physicians

University of minnesota physicians serves as the integrated group practice for the university of minnesota medical school full-time faculty to provide the highest quality healthcare to patients and their families.university of minnesota…

Health
5
Children's Hospital Corporation

Provider of pediatric healthcare, education, research & community service

Health
6
Texas Children's Hospital

Texas children's hospital, headquartered in houston, texas, is a not-for-profit organization whose mission is to create a healthier future for children and women throughout our global community by leading in patient care, education and…

Health
7
University of Chicago Medical Center

Our mission at the university of chicago medicine is to provide superior health care through rigorous research, innovative education, and comprehensive care and healing. in partnership with our colleagues, we pursue life-changing…

Health
8
Thomas Jefferson University

Thomas jefferson university ("tju") is a comprehensive university with preeminence in transdisciplinary, experiential professional education, research and discovery, delivering exceptional value for the 21st century students with…

Education
9
Children's Health Care

We champion the health needs of children and families. we are committed to improving children's health by providing the highest-quality, family centered care, advanced through research and education.

Health
10
Rhode Island Hospital

As a founding hospital in the brown university health system, rih is committed to its mission: delivering health with care.

Health
11
Methodist Healthcare-Memphis Hospitals

Methodist le bonheur healthcare, in partnership with its medical staffs, will collaborate with patients and their families to be the leader in providing high quality, cost-effective patient-and family-centered care. services will be…

Health
12
Children's Hospital of Pittsburgh Foundation

Children's hospital of pittsburgh foundation is the sole fundraising arm of upmc children's hospital of pittsburgh.the foundation exists to provide financial support for the hospital's mission of improving the health and well-being of…

Health
How this is measured
The grantee most central to the portfolio’s shape is Children's Hospital; the most unlike its peers is Children's Hospital Colorado. Resemblance is measured on each organization’s own IRS 990 mission text; it reflects how work is described, not its quality or impact.
04the grantee network

14 grantees tracked through their own filings, 2017–2025.

Each grant beside the grantee’s revenue from every source, year by year.

How this is measured

Counted here: distinct organizations funded across 2017 to 2025, not grant rows in a single year, so this will not match the grant count on the cover. 14 of the 17 grantees resolved in that span have returns of their own we could reconcile.

Each grantee is resolved to its own IRS returns. Association, dated; never a causal claim.

0
Load-bearing (≥25% of a budget)
1
Early backer (in before they grew)
14/14
Grantees still filing
12/14
Grew since first funded

Where the money sits, by cause and then by grantee

CHILDREN'S HOSPITAL: $440,768 · HealthCHILDREN'S HOSPITALTHE CHILDREN'S HOSPITAL OF PHILADELPHIA FOUNDATION: $232,800 · HealthTHE CHILDREN'S HOSPITAL OF PHILADELPHIA FOUNDA…THE CHILDREN'S HOSPITAL OF PHILADELPHIA: $100,000 · HealthTHE CHILDREN'S HOSPITAL OF PHILADELPHIAChildren's Hospital Colorado Foundation: $98,314 · HealthChildren's Hospital Colorado FoundationChildren's Hospital Colorado: $77,585 · HealthChildren's Hospital ColoradoNYU LANGONE HEALTH SYSTEM: $60,000 · HealthNYU LANGONE HEALTH SYSTEM+3 more: $85,000 · Health+3 moreTRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA: $407,204 · EducationTRUSTEES OF THE UNIVERSITY OF PEN…Baylor College of Medicine: $176,714 · EducationBaylor College of MedicineWASHINGTON UNIVERSITY: $140,000 · EducationWASHINGTON UNIVERSITYUNIVERSITY OF OREGON FOUNDATION: $55,874 · EducationUNIVERSITY OF OREGON FOUNDATIONREGENTS OF THE UNIVERSITY OF COLORADO: $558,640 · OtherREGENTS OF THE UNIVERSITY OF COL…REGENTS OF THE UNIVERSITY OF CALIFORNIA: $127,465 · OtherREGENTS OF THE UNIVERSITY OF CAL…BOARD OF REGENTS OF THE UNIVERSITY OF NEBRASKA: $75,200 · OtherBOARD OF REGENTS OF THE UNIVERSI…KENNEDY KRIEGER FOUNDATION INC: $18,000 · Philanthropy
Health$1,094,467Education$779,792Other$761,305Philanthropy$18,000

Each grantee by its size and the funder’s share of it; top left is load-bearing

25%50%75%100%$100Mgrantee revenue →↑ funder's share of their budgetCHILDREN'S HOSPITAL: $440,768 over 5y, 0.0% of budgetTRUSTEES OF THE UNIVERSITY OF PENNSYLVANIA: $407,204 over 6y, 0.0% of budgetTHE CHILDREN'S HOSPITAL OF PHILADELPHIA FOUNDATION: $232,800 over 3y, 0.1% of budgetBaylor College of Medicine: $176,714 over 3y, 0.0% of budgetWASHINGTON UNIVERSITY: $140,000 over 4y, 0.0% of budgetTHE CHILDREN'S HOSPITAL OF PHILADELPHIA: $100,000 over 2y, 0.0% of budgetChildren's Hospital Colorado Foundation: $98,314 over 1y, 0.1% of budgetChildren's Hospital Colorado: $77,585 over 2y, 0.0% of budgetNYU LANGONE HEALTH SYSTEM: $60,000 over 1y, 0.6% of budgetUNIVERSITY OF OREGON FOUNDATION: $55,874 over 1y, 0.0% of budgetVanderbilt University Medical Center: $35,000 over 1y, 0.0% of budgetTHE CLEVELAND CLINIC FOUNDATION: $25,000 over 1y, 0.0% of budgetNYU LANGONE HOSPITALS: $25,000 over 1y, 0.0% of budgetKENNEDY KRIEGER FOUNDATION INC: $18,000 over 1y, 0.1% of budget
Grantee by grantee: a decade per organization, before and after funding

A decade per grantee: revenue shaded, grants as bars, all rows on one timeline.

How much its grantees rely on government

Each dot is one organization International Foundation For CDKL5 Research funds: left to right is the share of its income from government, bottom to top the share from International Foundation For CDKL5 Research. Bigger dots raise more.

2024
’20’21’22’23’24’25
no gov · 10%0%1%3%5%funder's share of their income ↑0%5%10%15%20%share of the org’s income from government →
    no gov moneyreceives it· size = income
    1get no government money at all
    2report government grants on their 990 we could not trace to a source (not plotted)
    0rely on government for over half their income
    ⤢ axis zoomed · 0–20%
    typical government reliance, FY20–25
    How this is measured
    Government income is each org’s traced federal awards (USASpending grants and contracts) plus state payments (open checkbooks) as a share of its total revenue (IRS Form 990); the self-reported government-grant line (990 line 1e) is carried for cross-check: a grantee that reports government grants we could not trace to a source is left off the chart rather than shown as receiving none. An association, not a claim that a grant caused the public funding. Coverage is precision-first, a floor rather than a census; state records exist for 9 states, so a grantee outside them shows no state figure (dimmed) rather than a false zero. Federal award amounts are obligations, which can span years, so a single-year share is indicative. 990 filings lag 12 to 24 months.
    05Through Plinth

    Warm introductions · Powered by PlinthPlus

    How do I get to International Foundation For CDKL5 Research?

    Find your warmest path to International Foundation For CDKL5 Research through trustees and officers whose names appear on both boards. Search for your organization and Plinth traces the shortest route it can evidence.

    Each link is a name appearing on two organizations’ public IRS 990 filings, matched on that name and, where the filings support it, on location. A same-state match has geographic support, which is a second matching feature rather than confirmation that the two are one person; a cross-state one is the likeliest to be two people who share a name. Every hop shows its tier, low-confidence and distant paths are held back rather than guessed, and it is worth confirming the person before you use the introduction.

    On method. Every financial figure here is read from IRS e-file XML, the funder’s own 990/990-PF, and from the multi-year returns of the 17 grantees we resolved, each linked to its source. Grantee outcomes are each organization’s own program-service reporting (Form 990, Part III), read as association with funding, never as caused by it. Low-confidence name matches are suppressed rather than guessed. How we build these →

    How this is measured
    Each figure carries one of six labels. Filed is what the funder reported on its return. Official is another government record about an organization, such as a federal award or a charity register, joined by name where no shared identifier exists. Resolved is an identity we worked out where the filing named a recipient without an EIN, kept only above a measured confidence threshold. Computed is arithmetic over those, like themes, portfolio clusters and co-funder strength. Context is a statistic about a place rather than about an organization, which is what the need overlay is: it describes the area a grantee’s address sits in, not where its work lands. Inferred is drawn by a model from text, like the partnerships read out of public news and organization websites. Each is labeled where it appears.

    Generated from the IRS Form 990 e-file return for fiscal year 2024, released 2024. Filings run roughly 12 to 24 months behind; figures are dated accordingly.

    Source object · view filing

    Play a game based on International Foundation For CDKL5 Research’s filings →

    More from the funding graph

    The unnamed billions
    grants reported with no recipient in the public record
    The regranting layer
    51% of grant dollars land in the regranting layer
    The DAF merry-go-round
    $9.7B circulates between donor-advised funds
    The endowment market
    who holds foundation money, and what just moved
    The camps
    funders cluster by geography, not ideology
    By state
    where grant money is based, and what stays home