This organization files Form 990, which has no section for application policy. Its filings cannot say either way.
The latest filing we hold carries no statement about applications. That is not the same as closed: public-charity Form 990s have no field for it, and many foundations leave the section blank.
Grants paid by year
Total assets by year
Where the money went · FY2024
Form 990 splits expenses into program services, management and fundraising. The split is self-reported, and a grantmaker, a research institute and a direct-service nonprofit book the same work differently. A line the return does not carry reads "not available"; it is never counted as zero.
| Year | Form | Revenue | Expenses | Grants paid | Assets | Net assets |
|---|---|---|---|---|---|---|
| FY2024 | 990 | $4,942,571 | $5,475,276 | $278,084 | $5,592,191 | $4,698,792 |
| FY2023 | 990 | $4,455,414 | $4,311,066 | $405,429 | $6,421,254 | $5,014,683 |
| FY2022 | 990 | $3,508,920 | $4,712,959 | $1,062,750 | $6,079,315 | $4,678,617 |
| FY2021 | 990 | $5,488,220 | $4,615,323 | $2,315,936 | $7,638,819 | $6,352,410 |
| FY2020 | 990 | $2,627,205 | $2,864,804 | $625,018 | $5,835,495 | $5,533,672 |
Figures are as reported on the e-filed return, with no restatement. Fiscal years are the funder's own tax year, labelled by the calendar year the period ends in. A blank line means the return does not carry that figure; a real zero shows as $0. When an amended return replaces an original, every figure here uses the amended return. The original is not shown. Giving is what the funder actually paid out toward its charitable purpose in the year (qualifying distributions on Form 990-PF, charitable disbursements otherwise). Assets are what it holds; giving is what moves.
Recipient focus areas
Where recipients are
Based on the 84% of grant rows we could match to an organization record. The rest stay as reported. The IRS assigns the NTEE category when it grants exemption. It often reflects the original filing, not today's giving.
| Recipient | Purpose | Amount | Year | Source |
|---|---|---|---|---|
| YALE UNIVERSITYNEW HAVEN, CT | CHARACTERIZATION OF DUX4-INDUCED METABOLIC AND HYPOXIC CHANGES IN FSHD AND IDENTIFICATION OF TOXIC DUX4-INDUCED TRANSCRIPTS. | $360,280 | 2021 | |
Recipients are shown as the funder wrote them on the return. A recipient with a link was matched to an organization record; the rest stay as reported and are never guessed.
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| Christine Ford | FORMER SECRETARY | 10.00 | $0 |
| Ellen K Hannan | FORMER TREASURER | 10.00 | $0 |
| George Pollock Jr | TREASURER | 10.00 | $0 |
| Howard L Chabner Jd | VICE CHAIRMAN |
From the officer list on the latest e-filed return. Compensation is as reported there; a blank means the return carries no figure.
| UNIVERSITY OF KANSAS MEDICAL CENTERFAIRWAY, KS |
| CLINICAL TRIALS RESEARCH NETWORK (CTRN) FOR FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY (FSHD) AND ARTIFICAL INTELLIGENCE PROOF OF CONCEPT FOR FSHD RESEARCH |
| $348,000 |
| 2020 |
| UNIVERSITY OF KANSAS MEDICAL CENTERFAIRWAY, KS | CLINICAL TRIALS RESEARCH NETWORK (CTRN) FOR FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY (FSHD) | $300,000 | 2021 |
| THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITALCOLUMBUS, OH | DEVELOPING AAV-CRISPR-CAS13 BASED GENE THERAPY FOR FSHD | $193,310 | 2021 |
| UNIVERSITY OF MARYLANDBALTIMORE, MD | SLC34A2 AS A BIOMARKER FOR FSHD | $152,600 | 2021 |
| UNIVERSITY OF COLORADODENVER, CO | MECHANISM OF CONTEXT-SPECIFIC NMD INHIBITION BY DUX4 | $152,600 | 2021 |
| JOHNS HOPKINS UNIVERSITYBALTIMORE, MD | THE FIBRO-ADIPOGENIC PROGENITORS, THE EXOSOMES, AND THE FSHD MYOPATHY | $143,000 | 2022 |
| ST LOUIS UNIVERSITYST LOUIS, MO | MOLECULAR MECHANISMS OF P38-DEPENDENT AND INDEPENDENT DUX4 ACTIVATION DURING MYOGENESIS | $121,900 | 2021 |
| UNIVERSITY OF KANSAS MEDICAL CENTERFAIRWAY, KS | CLINICAL TRIALS RESEARCH NETWORK (CTRN) FOR FACIOSCAPULOHUMERAL MUSCULAR DYSTROPHY (FSHD) | $120,000 | 2022 |
| UNIVERSITY OF MINNESOTAMINNEAPOLIS, MN | INTERROGATION OF MDUX EXPRESSION IN MUSCLE IN MICE | $83,500 | 2022 |
| THE RESEARCH INSTITUTE AT NATIONWIDE CHILDREN'S HOSPITALCOLUMBUS, OH | IN VIVO DETECTION OF DUX4 MRNA USING RNASCOPE | $80,100 | 2020 |
| CHILDREN'S RESEARCH INSTITUTE CHILDRENS NATIONAL HEALTH SYSTEMSSILVER SPRING, MD | MEMBRAN REPAIR DEFICIT IN FSHD PATHOPHYSIOLOGY | $74,829 | 2020 |
| ST LOUIS UNIVERSITYST LOUIS, MO | MOLECULAR MECHANISMS OF P38-DEPENDENT AND -INDEPENDENT DUX4 ACTIVATION DURING MYOGENESIS | $67,100 | 2022 |
| CHILDREN'S RESEARCH INSTITUTE CHILDRENS NATIONAL HEALTH SYSTEMSSILVER SPRING, MD | MEMBRANE REPAIR DEFICIT IN FSHD PATHOPHYSIOLOGY | $63,735 | 2021 |
| UNIVERSITY OF UTAHSALT LAKE CITY, UT | NANOPORE CAS9-TARGETED SEQUENCING (NCATS DIAGNOSTICS FOR FSHD) | $49,621 | 2021 |
| UNIVERSITY OF ROCHESTERROCHESTER, NY | FSHD BIOLOGICAL RESOURCES AVAILABLE THROUGH THE CTRN (BIOAVAILABLE) | $24,310 | 2021 |
| UNIVERSITY OF MARYLANDBALTIMORE, MD | DEVELOPING A "SANDWICH" IMMUNOASSAY FOR SLC34A2, A POTENTIAL BIOMARKER FOR FSHD | $19,700 | 2020 |
| UNIVERSITY OF ROCHESTERROCHESTER, NY | DIGITIZING THE US FSHD PATIENT REGISTRY | $7,545 | 2020 |
| OHIO STATE UNIVERSITY MEDICAL CENTER DEVELOPMENT & ALUMNI AFFAIRSCOLUMBUS, OH | FSHD RESEARCH FUND | $5,000 | 2020 |
| 10.00 |
| $0 |
| James A Chin Sr | CHAIRMAN | 10.00 | $0 |
| Mel Hayes | BOARD MEMBER | 1.00 | $0 |
| Lee Frank Kolakowski Phd | BOARD MEMBER | 10.00 | $0 |
| Linda Laurello | BOARD MEMBER | 1.00 | $0 |
| Robert Humphreys Jr | BOARD MEMBER | 1.00 | $0 |
| Michelle Helen Mackay | BOARD MEMBER | 1.00 | $0 |
| Neil Andrew Solomon Md Facp | BOARD MEMBER | 1.00 | $0 |
| Stuart Lai | BOARD MEMBER | 1.00 | $0 |
| Chris Mancill | BOARD MEMBER | 1.00 | $0 |
| William R Lewis Iii Md | BOARD MEMBER | 1.00 | $0 |
| William Sarraille | BOARD MEMBER | 1.00 | $0 |
| Bruce Ryskamp | BOARD MEMBER | 1.00 | $0 |
| Amy Z Bekier | BOARD MEMBER | 10.00 | $0 |
| Jack Gerblick | BOARD MEMBER | 1.00 | $0 |
| Jason Shi | BOARD MEMBER | 1.00 | $0 |
| Agnes M Mestrich | CHIEF FINANCIAL OFFICER | 40.00 | $168,829 |
| Mark Stone | CEO & PRESIDENT | 40.00 | $226,757 |
| Kenneth Alexander Kahtava | CHIEF OPERATING OFFICER | 40.00 | $190,956 |
| June Kinoshita | DIRECTOR OF RESEARCH AND PATIENT ENGAGEMENT | 40.00 | $110,048 |
| Carolyn Lloyd | CHIEF DEVELOPMENT OFFICER | 40.00 | $145,482 |
| Beth Johnston | CHIEF COMMUNITY ENGAGEMENT OFFICER | 40.00 | $151,086 |
| Amanda Hill | SENIOR DIRECTOR OF RESEARCH AND CARE | 40.00 | $120,469 |
Nearest by size, location and giving pattern in the database. Geography weighs heavily. Treat it as a starting list, not a ranking of fit.
Form 990 · FY2023 · period ending Dec 31, 2023IRS bulk XML
Filing id 202442069349300709
Form 990 · FY2022 · period ending Dec 31, 2022
Filing id 202340899349300449
Form 990 · FY2021 · period ending Dec 31, 2021
Filing id 202240959349300404
Form 990 · FY2020 · period ending Dec 31, 2020
Filing id 202120919349301122
Form 990 · FY2019 · period ending Dec 31, 2019
Filing id 202010939349300821
Form 990 · FY2018 · period ending Dec 31, 2018
Filing id 201910949349301026
Form 990 · FY2017 · period ending Dec 31, 2017
Filing id 201801139349300860
Form 990 · FY2016 · period ending Dec 31, 2016
Filing id 201710969349300811
IRS filings are the source for every fact on this page. Nothing a model writes is ever a source; it can only point at a row here.