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 · FY2025
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 |
|---|---|---|---|---|---|---|
| FY2025 | 990 | $46,783,745 | $40,232,360 | $5,186,032 | $38,361,666 | $26,265,097 |
| FY2024 | 990 | $42,610,862 | $38,344,617 | $5,059,784 | $31,286,582 | $19,532,115 |
| FY2023 | 990 | $35,267,282 | $32,008,378 | $4,623,204 | $26,726,645 | $15,265,870 |
| FY2022 | 990 | $31,176,116 | $29,600,280 | $4,230,463 | $19,962,086 | $12,024,540 |
| FY2021 | 990 | $24,427,097 | $23,005,505 | $3,294,397 | $18,494,765 | $10,448,704 |
| FY2020 | 990 | $18,464,314 | $17,552,600 | $2,697,926 | $16,657,850 | $9,027,112 |
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 77% 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 |
|---|---|---|---|---|
| NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)WOBURN, MA | SUBAWARD | $2,069,222 | 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 |
|---|---|---|---|
| Ms Bonnie Allin | BOARD MEMBER | 1.00 | $0 |
| Ms Mara G Aspinall | BOARD MEMBER | 1.00 | $0 |
| Mr Peter Barton Hutt | BOARD MEMBER | 1.00 | $0 |
| Dr Karen Bernstein | BOARD MEMBER |
From the officer list on the latest e-filed return. Compensation is as reported there; a blank means the return carries no figure.
| SUBAWARD |
| $1,964,277 |
| 2024 |
| NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)QUINCY, MA | SUBAWARD | $1,604,706 | 2022 |
| NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)QUINCY, MA | SUBAWARD | $1,517,664 | 2023 |
| SOCIETY OF CRITICAL CARE MEDICINECHICAGO, IL | SUBAWARD | $1,377,667 | 2023 |
| NATIONAL ORGANIZATION FOR RARE DISORDERSQUINCY, MA | SUBAWARD | $1,319,385 | 2025 |
| BAYLOR RESEARCH INSTITUTEDALLAS, TX | DEVELOP A HOLLOW FIBER MODEL FOR TUBERCULOSIS RESEARCH | $995,538 | 2020 |
| SOCIETY OF CRITICAL CARE MEDICINECHICAGO, IL | SUBAWARD | $835,334 | 2022 |
| NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD)WOBURN, MA | RARE DISEASE EFFORTS | $712,409 | 2020 |
| EMORY UNIVERSITYATLANTA, GA | SUBAWARD | $525,000 | 2024 |
| REGENTS OF THE UNIVERSITY OF CALIFORNIASAN FRANCISCO, CA | TUBERCULOSIS RESEARCH | $502,984 | 2020 |
| JOHNS HOPKINS UNIVERSITYCHICAGO, IL | SUBAWARD | $501,197 | 2024 |
| JOHNS HOPKINS UNIVERSITYCHICAGO, IL | SUBAWARD | $480,752 | 2023 |
| SOCIETY OF CRITICAL CARE MEDICINECHICAGO, IL | SUBAWARD | $480,000 | 2024 |
| NORTHWESTERN UNIVERSITYEVANSTON, IL | SUBAWARD | $381,946 | 2025 |
| UNIVERSITY OF CALIFORNIASAN FRANCISCO, CA | SUBAWARD | $347,500 | 2025 |
| THE REGENTS OF THE UNIVERSITY OF CALIFORNIASAN FRANCISCO, CA | SUBAWARD | $347,500 | 2024 |
| EMORY UNIVERSITYATLANTA, GA | SUBAWARD | $314,286 | 2022 |
| NORTHWESTERN UNIVERSITYCHICAGO, IL | SUBAWARD | $265,799 | 2021 |
| JOHNS HOPKINS UNIVERSITYCHICAGO, IL | SUBAWARD | $263,051 | 2022 |
| SEATTLE CHILDREN'S HOSPITALSEATTLE, WA | SUBAWARD | $234,728 | 2025 |
| YALE UNIVERSITYNEW HAVEN, CT | SUBAWARD | $217,900 | 2024 |
| WAKE FOREST UNIVERSITYCHARLOTTE, NC | SUBAWARD | $215,717 | 2025 |
| UNIVERSITY OF ROCHESTERROCHESTER, NY | SUBAWARD | $186,530 | 2022 |
| THE REGENTS OF THE UNIV OF MICHIGANANN ARBOR, MI | SUBAWARD | $183,750 | 2022 |
| 1.00 |
| $0 |
| Mr Louis Breton | BOARD MEMBER | 1.00 | $0 |
| Dr Timothy R Franson | BOARD MEMBER | 1.00 | $0 |
| Ms Kay Holcombe | BOARD MEMBER | 1.00 | $0 |
| Mr Shaun A Kirkpatrick | BOARD MEMBER | 1.00 | $0 |
| Mr Alan G Levin | BOARD MEMBER | 1.00 | $0 |
| Mr James W Newman | BOARD MEMBER | 1.00 | $0 |
| Dr Tomas Salmonson | BOARD MEMBER | 1.00 | $0 |
| Mr M Wainwright Fishburn Jr | CHAIRMAN | 1.00 | $0 |
| Mr Jeffery Jacob | VICE CHAIRMAN | 1.00 | $0 |
| Dr Klaus Romero | CEO | 40.00 | $465,393 |
| Ms Kristen Swingle | PRESIDENT & COO | 40.00 | $382,404 |
| Mr Kevin Perkins | CHIEF FINANCIAL OFFICER & TREASURER | 40.00 | $279,156 |
| Mr Paul Edmeier | CHIEF FINANCIAL OFFICER & TREASURER | 40.00 | $0 |
| Mr Lewis Barbieri | CORPORATE SECRETARY | 40.00 | $150,328 |
| Mr Richard Liwski | CHIEF TECHNOLOGY OFFICER | 40.00 | $267,416 |
| Mr Collin Hovinga | VP PROGRAMS | 40.00 | $273,459 |
| Dr Cheryl Coon | VP PROGRAMS | 40.00 | $322,075 |
| Dr Marco Schito | EXECUTIVE DIRECTOR | 40.00 | $261,008 |
| Dr Sudhir Sivakumaran | EXECUTIVE DIRECTOR | 40.00 | $256,179 |
| Dr Maaike Everts | EXECUTIVE DIRECTOR | 40.00 | $257,993 |
| Dr Diane Stephenson | EXECUTIVE DIRECTOR | 40.00 | $260,883 |
| Ms Sonya Eremenco | EXECUTIVE DIRECTOR | 40.00 | $242,607 |
| Dr Shu Chin Ma | VP PROGRAMS | 40.00 | $255,657 |
| Mr Yi Zhang | SENIOR DIRECTOR | 40.00 | $197,565 |
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 · FY2024 · period ending Jun 30, 2024IRS bulk XML
Filing id 202531009349300938
Form 990 · FY2023 · period ending Jun 30, 2023IRS bulk XML
Filing id 202410809349300526
Form 990 · FY2022 · period ending Jun 30, 2022
Filing id 202330979349300518
Form 990 · FY2021 · period ending Jun 30, 2021
Filing id 202240809349300989
Form 990 · FY2020 · period ending Jun 30, 2020
Filing id 202111279349303111
Form 990 · FY2019 · period ending Jun 30, 2019
Filing id 202001209349301820
Form 990 · FY2018 · period ending Jun 30, 2018
Filing id 201900589349301615
Form 990 · FY2017 · period ending Jun 30, 2017
Filing id 201810549349300546
Form 990 · FY2016 · period ending Jun 30, 2016
Filing id 201710409349300521
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.