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END DUCHENNE MUSCULAR DYSTROPHY THROUGH RESEARCH, ADVOCACY, EDUCATION, & OPTIMAL MEDICAL CARE.
Source: IRS Form 990 (Tax Year 2024)
Source: IRS e-Filed Form 990 (from the IRS e-File system), Tax Year 2024
Total Revenue
▼$14.3M
Program Spending
88%
of total expenses go to program services
Total Contributions
$10M
Total Expenses
▼$12.9M
Total Assets
$12.6M
Total Liabilities
▼$1.1M
Net Assets
$11.5M
Officer Compensation
→$370.1K
Other Salaries
$3M
Investment Income
$150.6K
Fundraising
▼$106.9K
Tax Year 2024 · Source: IRS Form 990, Schedule I (Grants and Other Assistance)
Total grants awarded: $2.5M
| Recipient | Location | Amount | Type | Purpose |
|---|---|---|---|---|
CINCINNATI CHILDREN'S HOSPITAL MC31-0833936 | CINCINNATI, OH | $617K | Cash | RESEARCH- ACTION NETWORK GRANT |
UNIVERSITY OF FLORIDA FOUNDATION59-0974739 | GAINESVILLE, FL | $300K | Cash | RESEARCH - PRECLINICAL THERAPEUTIC ASSESSMENT LAB |
UNIVERSITY OF ROCHESTER MEDICAL CENTER16-0743209 | ROCHESTER, NY | $210K | Cash | RESEARCH - NEWBORN SCREENING |
NYU LANGONE HEALTH13-5562308 | NEW YORK, NY | $200K | Cash | RESEARCH - GENE THERAPY |
UNIVERSITY OF FLORIDA59-6002052 | GAINESVILLE, FL | $178.5K | Cash | RESEARCH - WELLSTONE SUPPLEMENT |
CRITICAL PATH20-1991334 | TUCSON, AZ | $100K | Cash | RESEARCH - SUPPORT OF DUCHENNE REGULATORY SCIENCE CONSORTIUM |
NEW YORK UNIVERSITY13-5562308 | NEW YORK, NY | $100K | Cash | RESEARCH - PEDIATRIC THERAPY MEDICAL ETHICS |
OHIO STATE UNIVERSITY31-6025986 | COLUMBUS, OH | $84.4K | Cash | RESEARCH - FELLOWSHIP |
NORTHWESTERN UNIVERSITY36-2167817 | EVANSTON, IL | $73.5K | Cash | RESEARCH - WELLSTONE SUPPLEMENT |
NATIONWIDE CHILDREN'S HOSPITAL31-6056230 | COLUMBUS, OH | $60K | Cash | RESEARCH - MEETING SUPPORT |
UNIVERSITY OF CALIFORNIA BERKELEY94-6002123 | BERKLEY, CA | $57.7K | Cash | RESEARCH - BIOMARKER |
ARKANSAS CHILDREN'S HOSPITAL71-0694931 | LITTLE ROCK, AR | $57.6K | Cash | RESEARCH- DORI EHR PROGRAM |
OHIO STATE UNIVERSITY31-6025986 | CINCINNATI, OH | $50K | Cash | RESEARCH - PATIENT PREFERENCE |
UNIVERSITY OF COLORADO AT DENVER84-6000555 | AURORA, CO | $50K | Cash | RESEARCH - DORI EHR PROGRAM |
ANALYSIS GROUPCTAP04-2727260 | BOSTON, MA | $40K | Cash | RESEARCH- SUPPORT OF COLLECTIVE ANALYSIS TRAJECTORY PROJECT |
UNIVERSITY OF FLORIDA59-6002052 | GAINESVILLE, FL | $40K | Cash | RESEARCH - MEETING SUPPORT |
OHIO STATE UNIVERSITY31-6025986 | COLUMBUS, OH | $28.2K | Cash | RESEARCH - DIVERSITY EQUITY AND INCLUSION INTERVIEWS |
UNIVERISTY OF UTAH PRIMARY CHILDREN'S EHR87-6000525 | SALT LAKE CITY, UT | $25.2K | Cash | RESEARCH - DORI EHR PROGRAM |
CINCINNATI CHILDREN'S HOSPITAL MC31-0833936 | CINCINNATI, OH | $25K | Cash | RESEARCH- NEWBORN SCREENING |
REGENTS OF UNIVERSITY OF MINNESOTA41-6007513 | MINNEAPOLIS, MN | $25K | Cash | RESEARCH - CLINICAL TRIALS |
THE UNIVERSITY OF IOWA42-6004813 | IOWA CITY, IA | $25K | Cash | RESEARCH - DORI EHR PROGRAM |
UNIVERSITY OF MASSACHUSETTS CHAN MED SCHOOL04-3167352 | WORCESTER, MA | $20K | Cash | RESEARCH - NEWBORN SCREENING |
OHIO STATE UNIVERSITY31-6025986 | CINCINNATI, OH | $19K | Cash | RESEARCH - NEWBORN SCREENING |
ARKANSAS CHILDREN'S HOSPITAL71-0694931 | LITTLE ROCK, AR | $15K | Cash | RESEARCH- NEWBORN SCREENING |
REGENTS OF THE UNIVERSITY OF CALIFORNIA - LA95-6006143 | LOS ANGELES, CA | $15K | Cash | RESEARCH - WELLSTONE SUPPLEMENT |
REGENTS OF THE UNIVERSITY OF CALIFORNIA - LA95-6006143 | LOS ANGELES, CA | $10K | Cash | RESEARCH - DMD MOLECULAR AND CELLULAR DYNAMICS AT SINGLE NUCLEAR RESOLUTION |
VANDERBILT35-2525741 | NASHVILLE, TN | $10K | Cash | RESEARCH - NEWBORN SCREENING |
VIRGINIA TECH FOUNDATION54-0721690 | BLACKSBURG, VA | $7,500 | Cash | RESEARCH - ROBOTICS |
THE NEMOURS FOUNDATION59-0634433 | WILMINGTON, DE | $7,273 | Cash | CARE PROGRAM - AWARD FOR MAINTAINING PPMD CERTIFIED DUCHENNE CARE CENTER STANDARDS |
| Total | $2.5M | |||
CINCINNATI, OH
$617K
GAINESVILLE, FL
$300K
ROCHESTER, NY
$210K
NEW YORK, NY
$200K
GAINESVILLE, FL
$178.5K
TUCSON, AZ
$100K
NEW YORK, NY
$100K
COLUMBUS, OH
$84.4K
EVANSTON, IL
$73.5K
COLUMBUS, OH
$60K
UNIVERSITY OF CALIFORNIA BERKELEY
BERKLEY, CA
$57.7K
LITTLE ROCK, AR
$57.6K
CINCINNATI, OH
$50K
UNIVERSITY OF COLORADO AT DENVER
AURORA, CO
$50K
ANALYSIS GROUPCTAP
BOSTON, MA
$40K
GAINESVILLE, FL
$40K
COLUMBUS, OH
$28.2K
UNIVERISTY OF UTAH PRIMARY CHILDREN'S EHR
SALT LAKE CITY, UT
$25.2K
CINCINNATI, OH
$25K
REGENTS OF UNIVERSITY OF MINNESOTA
MINNEAPOLIS, MN
$25K
THE UNIVERSITY OF IOWA
IOWA CITY, IA
$25K
UNIVERSITY OF MASSACHUSETTS CHAN MED SCHOOL
WORCESTER, MA
$20K
CINCINNATI, OH
$19K
LITTLE ROCK, AR
$15K
REGENTS OF THE UNIVERSITY OF CALIFORNIA - LA
LOS ANGELES, CA
$15K
REGENTS OF THE UNIVERSITY OF CALIFORNIA - LA
LOS ANGELES, CA
$10K
VANDERBILT
NASHVILLE, TN
$10K
BLACKSBURG, VA
$7,500
WILMINGTON, DE
$7,273
Source: USAspending.gov
No federal awards found for this organization.
USAspending.gov tracks federal grants, cooperative agreements, and other financial assistance. Not all nonprofits receive federal funding.
Source: Federal Audit Clearinghouse (fac.gov)
Federal audit data is temporarily unavailable.
Single audits are required for entities expending $750,000+ in federal awards annually.
Tax Year 2024 · Source: IRS e-Filed Form 990Schedule J available
Individuals serving as officers, directors, or trustees of the organization.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other |
|---|
Source: IRS Publication 78, Auto-Revocation List & e-Postcard Data
Tax-deductible contributions: Yes
Deductibility code: PC
Sources: IRS e-Filed Form 990 (XML) & ProPublica Nonprofit Explorer
Scroll →
| Year | Revenue | Contributions | Expenses | Assets | Net Assets |
|---|---|---|---|---|---|
| 2024IRS e-File | $14.3M | $10M | $12.9M | $12.6M | $11.5M |
| 2023IRS e-File | $13.9M | $12.7M | $12.1M | $10.4M | $9.8M |
| 2022 | $10.8M | $10M | $11M | $8.6M | $7.9M |
| 2021 | $10.9M |
Sources: ProPublica Nonprofit Explorer & IRS e-File Index
Financial data: IRS e-Filed Form 990 (Tax Year 2024)
Leadership & compensation: IRS e-Filed Form 990, Part VII (Tax Year 2024)
Organization info: IRS Business Master File
Tax-deductibility: IRS Publication 78
| Total |
|---|
| Patricia A Furlong | President And CEO | 40 | $370.1K | $0 | $13.7K | $383.8K |
| Gretchen Egner | Board Chairman | 8 | $0 | $0 | $0 | $0 |
| Alpa Khushalani | Vice Chair | 8 | $0 | $0 | $0 | $0 |
| Dawn Rezkalla | Treasurer | 6 | $0 | $0 | $0 | $0 |
| Deanne Friar | Secretary | 6 | $0 | $0 | $0 | $0 |
Patricia A Furlong
President And CEO
$383.8K
Hrs/Wk
40
Compensation
$370.1K
Related Orgs
$0
Other
$13.7K
Gretchen Egner
Board Chairman
$0
Hrs/Wk
8
Compensation
$0
Related Orgs
$0
Other
$0
Alpa Khushalani
Vice Chair
$0
Hrs/Wk
8
Compensation
$0
Related Orgs
$0
Other
$0
Dawn Rezkalla
Treasurer
$0
Hrs/Wk
6
Compensation
$0
Related Orgs
$0
Other
$0
Deanne Friar
Secretary
$0
Hrs/Wk
6
Compensation
$0
Related Orgs
$0
Other
$0
Highest compensated employees who are not officers or directors.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Kaylan Moitoso | Chief Business Officer | 40 | $293.6K | $0 | $9,025 | $302.7K |
| Rachel Schrader | Vice President, Clinical Care & Education | 40 | $174.8K | $0 | $33.6K | $208.4K |
| Jodi Wolff | Chief Program Officer | 40 | $194.6K | $0 |
Kaylan Moitoso
Chief Business Officer
$302.7K
Hrs/Wk
40
Compensation
$293.6K
Related Orgs
$0
Other
$9,025
Rachel Schrader
Vice President, Clinical Care & Education
$208.4K
Hrs/Wk
40
Compensation
$174.8K
Related Orgs
$0
Other
$33.6K
Jodi Wolff
Chief Program Officer
$207K
Hrs/Wk
40
Compensation
$194.6K
Related Orgs
$0
Other
$12.4K
Members of the governing board. Board members often serve without compensation.
| Name | Title | Hrs/Wk | Compensation | Related Orgs | Other | Total |
|---|---|---|---|---|---|---|
| Colin Rensch | Director | 2 | $0 | $0 | $0 | $0 |
| David N Hofstein | Executive Committee | 6 | $0 | $0 | $0 | $0 |
| Jeffrey Bigelow | Director | 2 | $0 | $0 | $0 | $0 |
| John Killian | Director | 2 | $0 | $0 | $0 | $0 |
| Lance Hester | Director | 2 | $0 | $0 | $0 | $0 |
| Maru Chapur | Director |
Colin Rensch
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
David N Hofstein
Executive Committee
$0
Hrs/Wk
6
Compensation
$0
Related Orgs
$0
Other
$0
Jeffrey Bigelow
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
| $10.5M |
| $7.8M |
| $10.2M |
| $8.7M |
| 2020 | $9.6M | $8.9M | $7.9M | $7.1M | $6.1M |
| 2019 | $11.4M | $11.2M | $10.9M | $4.7M | $4.4M |
| 2018 | $9.1M | $9M | $8.7M | $5.7M | $3.8M |
| 2017 | $9.3M | $9.1M | $9.1M | $4.8M | $3.4M |
| 2016 | $8.2M | $8.2M | $7.6M | $4.5M | $3.2M |
| 2015 | $8.7M | $8.7M | $7.7M | $2.7M | $2.5M |
| 2014 | $5.9M | $6M | $6.4M | $1.9M | $1.5M |
| 2013 | $5.6M | $5.9M | $6.1M | $3M | $1.9M |
| 2012 | $5.8M | $6.1M | $6.2M | $2.9M | $2.4M |
| 2011 | $6.3M | $6.6M | $6.2M | $3.2M | $2.8M |
| 2021 | 990 | Data |
| 2020 | 990 | Data |
| 2019 | 990 | Data |
| 2018 | 990 | Data |
| 2017 | 990 | Data |
| 2016 | 990 | Data |
| 2015 | 990 | Data |
| 2014 | 990 | Data |
| 2013 | 990 | Data |
| 2012 | 990 | Data |
| 2011 | 990 | Data |
| 2010 | 990 | — |
| 2009 | 990 | — |
| 2008 | 990 | — |
| 2007 | 990 | — |
| 2005 | 990 | — |
| 2003 | 990 | — |
| 2002 | 990 | — |
| 2001 | 990 | — |
| $12.4K |
| $207K |
| Ann Martin | Vice President, Community Research & Genetic Serv. | 40 | $176.6K | $0 | $16.8K | $193.4K |
Ann Martin
Vice President, Community Research & Genetic Serv.
$193.4K
Hrs/Wk
40
Compensation
$176.6K
Related Orgs
$0
Other
$16.8K
| 2 |
| $0 |
| $0 |
| $0 |
| $0 |
| Michelle Furlong | Director | 2 | $0 | $0 | $0 | $0 |
| Richard Klein | Director | 2 | $0 | $0 | $0 | $0 |
| Scott Perrin | Director | 2 | $0 | $0 | $0 | $0 |
| Sue Apkon | Director | 2 | $0 | $0 | $0 | $0 |
| Susan Huang | Director | 2 | $0 | $0 | $0 | $0 |
| Timothy Cripe | Director | 2 | $0 | $0 | $0 | $0 |
John Killian
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Lance Hester
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Maru Chapur
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Michelle Furlong
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Richard Klein
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Scott Perrin
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Sue Apkon
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Susan Huang
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0
Timothy Cripe
Director
$0
Hrs/Wk
2
Compensation
$0
Related Orgs
$0
Other
$0