MYOTONIC DYSTROPHY FOUNDATION
Cite this
Plain text MYOTONIC DYSTROPHY FOUNDATION. furp.org, nonprofit organization profile, tax years 2011–2024. https://furp.org/org/myotonic-dystrophy-foundation-205014628. Retrieved 2026-10-27.
APA furp.org. (n.d.). MYOTONIC DYSTROPHY FOUNDATION [Nonprofit organization profile; tax years 2011–2024]. Retrieved October 27, 2026, from https://furp.org/org/myotonic-dystrophy-foundation-205014628
MLA “MYOTONIC DYSTROPHY FOUNDATION.” furp.org, tax years 2011–2024, https://furp.org/org/myotonic-dystrophy-foundation-205014628. Accessed 27 Oct. 2026.
Retrieved 2026-10-27; covers tax years 2011–2024. Data: furp.org, CC BY 4.0.
2024 · Form 990 · revenue $3.7M · expenses $3.8M · assets $5.8M
- EIN
- 20-5014628
- Address
- 663 13TH ST STE 100, OAKLAND, CA 94612-1274
- Website
- WWW.MYOTONIC.ORG
- NTEE code
- G40
- Exempt type
- 501(c)(3): charitable, religious, educational, scientific or literary (corporation)
- Ruling date
- March 2007 (when the IRS recognized its exemption)
- IRS status
- Exempt (unconditional) (IRS Business Master File) IRS data ↗
- Tax-deductible donations
- Yes: listed in IRS Publication 78 (public charity) Pub 78 ↗
- Foundation status
- Public charity supported by the public (170(b)(1)(a)(vi))
- Cross-check
- ProPublica Nonprofit Explorer
Mission
To lead and mobilize resources toward effective management, treatment and ultimately a cure for myotonic dystrophy through education, advocacy and research.
Each tax year counts once: when a return was amended, only the latest return for that period is used below (superseded returns stay listed, greyed, under Finances).
People paid by the organization
8 people paid across every filing: current people first, then by total pay from this organization. Organizations counts every nonprofit each person appears on.
| Name | Latest title | Years | Latest year pay | Total pay from here | Organizations |
|---|---|---|---|---|---|
| Tanya Stevenson | CEO | 2020-2024 | $257,057 | $1,238,981 | 1 |
| Kleed Cumming | COMM/TECH MANAGER | 2020-2024 | $136,667 | $480,346 | 1 |
| Mindy Buchanan | DIR. OF PROGRAMS | 2023-2024 | $127,061 | $237,982 | 1 |
| Andreas Rohrwasser | CHIEF SCI. OFFICER | 2024 | $205,555 | $205,555 | 1 |
| Molly White (former) | CEO | 2012-2019 | $244,046 | $1,519,217 | 1 |
| Leah Hellerstein (former) | PROGRAM DIRECTOR | 2019 | $141,841 | $141,841 | 1 |
| Catherine Beck (former) | PROJECTS MANAGER | 2023 | $129,195 | $129,195 | 1 |
| Lisa Harvey (former) | Executive Direc | 2011 | $83,196 | $83,196 | 1 |
Officers and directors, no compensation reported
25 people listed on the returns with $0 (or no amount) in every compensation column: current people first. Hours are as filed on the latest return each person appears on.
| Name | Latest title | Years | Hrs/wk (latest) | Compensation | Organizations |
|---|---|---|---|---|---|
| Jeremy Kelly | CHAIR | 2011-2024 | 5 | $0 reported | 1 |
| Martha Montag Brown | VICE-CHAIR | 2017-2024 | 5 | $0 reported | 1 |
| Elizabeth Florence | Secretary | 2012-2024 | 5 | $0 reported | 1 |
| David Herbert | Treasurer | 2014-2024 | 5 | $0 reported | 1 |
| David Berman | Director | 2018-2024 | 1 | $0 reported | 1 |
| John W Day | Director | 2020-2024 | 1 | $0 reported | 1 |
| Charles Thornton | Director | 2020-2024 | 1 | $0 reported | 1 |
| Robert Campagna | Director | 2024 | 1 | $0 reported | 1 |
| Andrew Berglund | Director | 2024 | 1 | $0 reported | 1 |
| TOM McPeek | Director | 2021-2024 | 1 | $0 reported | 1 |
| Belen Esparis | Director | 2022-2024 | 1 | $0 reported | 1 |
| Haley Martinelli | Director | 2023-2024 | 1 | $0 reported | 1 |
| John Fitzpatrick (former) | Director | 2011-2023 | 1 | $0 reported | 1 |
| Joel Revill (former) | Director | 2018-2023 | 1 | $0 reported | 1 |
| Woody Kessel (former) | Chairman | 2018 | 5 | $0 reported | 1 |
| Marsha Dugan (former) | VICE-CHAIRMAN | 2017-2018 | 5 | $0 reported | 1 |
| John Brekka (former) | Director | 2011-2018 | 1 | $0 reported | 1 |
| Todd Stone (former) | Director | 2011-2018 | 1 | $0 reported | 1 |
| Woodie Kessel (former) | VICE-CHAIRMAN | 2012-2017 | 10 | $0 reported | 1 |
| Tim Kaine (former) | BOARD MEMBER | 2015-2016 | 1 | $0 reported | 1 |
| Melvin Kohn (former) | BOARD MEMBER | 2012-2016 | 1 | $0 reported | 1 |
| Timothy M Kaine (former) | BOARD MEMBER | 2011-2014 | 0 | $0 reported | 1 |
| Ona Louisa Mcconnell (former) | BOARD MEMBER | 2011-2013 | 0 | $0 reported | 1 |
| Richard Weston (former) | BOARD MEMBER | 2011-2013 | 0 | $0 reported | 1 |
| Don Mackenzie (former) | BOARD MEMBER | 2011 | 5 | $0 reported | 1 |
People by year
2024 · 16 people listed · 4 paid, $726K · 14 employees · 90 volunteers
| Name | Title | Hrs/wk | From org | From related | Other | Total | Orgs |
|---|---|---|---|---|---|---|---|
| TANYA STEVENSON | CEO | 60 | $247,799 | $0 | $9,258 | $257,057 | 1 |
| ANDREAS ROHRWASSER | CHIEF SCI. OFFICER | 40 | $197,755 | $0 | $7,800 | $205,555 | 1 |
| KLEED CUMMING | COMM/TECH MANAGER | 40 | $131,723 | $0 | $4,944 | $136,667 | 1 |
| MINDY BUCHANAN | DIR. OF PROGRAMS | 40 | $127,061 | $0 | $0 | $127,061 | 1 |
| JEREMY KELLY | CHAIR | 5 | $0 | $0 | $0 | $0 | 1 |
| MARTHA MONTAG BROWN | VICE-CHAIR | 5 | $0 | $0 | $0 | $0 | 1 |
| ELIZABETH FLORENCE | Secretary | 5 | $0 | $0 | $0 | $0 | 1 |
| DAVID HERBERT | Treasurer | 5 | $0 | $0 | $0 | $0 | 1 |
| DAVID BERMAN | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| JOHN W DAY | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| CHARLES THORNTON | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| ROBERT CAMPAGNA | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| ANDREW BERGLUND | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| TOM McPeek | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| BELEN ESPARIS | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| HALEY MARTINELLI | Director | 1 | $0 | $0 | $0 | $0 | 1 |
2023 · 16 people listed · 4 paid, $637K · 10 employees · 90 volunteers
| Name | Title | Hrs/wk | From org | From related | Other | Total | Orgs |
|---|---|---|---|---|---|---|---|
| TANYA STEVENSON | CEO | 60 | $240,871 | $0 | $23,477 | $264,348 | 1 |
| KLEED CUMMING | COMM/TECH MANAGER | 40 | $131,861 | $0 | $942 | $132,803 | 1 |
| CATHERINE BECK | PROJECTS MANAGER | 40 | $126,798 | $0 | $2,397 | $129,195 | 1 |
| MINDY BUCHANAN | DIR. OF PROGRAMS | 40 | $108,620 | $0 | $2,301 | $110,921 | 1 |
| JEREMY KELLY | CHAIR | 5 | $0 | $0 | $0 | $0 | 1 |
| MARTHA MONTAG BROWN | VICE-CHAIR | 5 | $0 | $0 | $0 | $0 | 1 |
| ELIZABETH FLORENCE | Secretary | 5 | $0 | $0 | $0 | $0 | 1 |
| DAVID HERBERT | Treasurer | 5 | $0 | $0 | $0 | $0 | 1 |
| DAVID BERMAN | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| JOHN W DAY | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| CHARLES THORNTON | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| JOHN FITZPATRICK | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| JOEL REVILL | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| TOM McPeek | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| BELEN ESPARIS | Director | 2 | $0 | $0 | $0 | $0 | 1 |
| HALEY MARTINELLI | Director | 1 | $0 | $0 | $0 | $0 | 1 |
2022 · 13 people listed · 2 paid, $356K · 5 employees · 104 volunteers
| Name | Title | Hrs/wk | From org | From related | Other | Total | Orgs |
|---|---|---|---|---|---|---|---|
| TANYA STEVENSON | CEO | 60 | $226,657 | $0 | $21,245 | $247,902 | 1 |
| KLEED CUMMING | COMM/TECH MANAGER | 0 | $107,821 | $0 | $547 | $108,368 | 1 |
| JEREMY KELLY | CHAIR | 5 | $0 | $0 | $0 | $0 | 1 |
| MARTHA MONTAG BROWN | VICE-CHAIR | 5 | $0 | $0 | $0 | $0 | 1 |
| ELIZABETH FLORENCE | Secretary | 5 | $0 | $0 | $0 | $0 | 1 |
| DAVID HERBERT | Treasurer | 5 | $0 | $0 | $0 | $0 | 1 |
| DAVID BERMAN | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| JOHN W DAY | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| CHARLES THORNTON | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| JOHN FITZPATRICK | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| JOEL REVILL | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| TOM McPeek | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| BELEN ESPARIS | Director | 1 | $0 | $0 | $0 | $0 | 1 |
2021 · 11 people listed · 1 paid, $237K · 5 employees · 90 volunteers
| Name | Title | Hrs/wk | From org | From related | Other | Total | Orgs |
|---|---|---|---|---|---|---|---|
| TANYA STEVENSON | CEO | 60 | $216,761 | $0 | $20,245 | $237,006 | 1 |
| JEREMY KELLY | CHAIR | 5 | $0 | $0 | $0 | $0 | 1 |
| MARTHA MONTAG BROWN | VICE-CHAIR | 5 | $0 | $0 | $0 | $0 | 1 |
| ELIZABETH FLORENCE | Secretary | 5 | $0 | $0 | $0 | $0 | 1 |
| DAVID HERBERT | Treasurer | 5 | $0 | $0 | $0 | $0 | 1 |
| DAVID BERMAN | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| JOHN W DAY | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| CHARLES THORNTON | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| JOHN FITZPATRICK | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| JOEL REVILL | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| TOM McPeek | Director | 1 | $0 | $0 | $0 | $0 | 1 |
2020 · 11 people listed · 2 paid, $335K · 4 employees · 60 volunteers
| Name | Title | Hrs/wk | From org | From related | Other | Total | Orgs |
|---|---|---|---|---|---|---|---|
| TANYA STEVENSON | CEO | 60 | $216,456 | $0 | $16,212 | $232,668 | 1 |
| KLEED CUMMING | COMMS. & TECH MNGR | 40 | $101,656 | $0 | $852 | $102,508 | 1 |
| JEREMY KELLY | CHAIR | 5 | $0 | $0 | $0 | $0 | 1 |
| MARTHA MONTAG BROWN | VICE-CHAIR | 5 | $0 | $0 | $0 | $0 | 1 |
| ELIZABETH FLORENCE | Secretary | 5 | $0 | $0 | $0 | $0 | 1 |
| DAVID HERBERT | Treasurer | 5 | $0 | $0 | $0 | $0 | 1 |
| DAVID BERMAN | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| JOHN W DAY | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| CHARLES THORNTON | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| JOHN FITZPATRICK | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| JOEL REVILL | Director | 1 | $0 | $0 | $0 | $0 | 1 |
2019 · 9 people listed · 2 paid, $386K · 5 employees · 180 volunteers
| Name | Title | Hrs/wk | From org | From related | Other | Total | Orgs |
|---|---|---|---|---|---|---|---|
| MOLLY WHITE | CEO | 60 | $224,747 | $0 | $19,299 | $244,046 | 1 |
| LEAH HELLERSTEIN | PROGRAM DIRECTOR | 40 | $131,178 | $0 | $10,663 | $141,841 | 1 |
| JEREMY KELLY | Chairman | 5 | $0 | $0 | $0 | $0 | 1 |
| MARTHA MONTAG BROWN | VICE-CHAIRMAN | 5 | $0 | $0 | $0 | $0 | 1 |
| ELIZABETH FLORENCE | Secretary | 5 | $0 | $0 | $0 | $0 | 1 |
| DAVID HERBERT | Treasurer | 5 | $0 | $0 | $0 | $0 | 1 |
| DAVID BERMAN | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| JOHN FITZPATRICK | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| JOEL REVILL | Director | 1 | $0 | $0 | $0 | $0 | 1 |
2018 · 11 people listed · 1 paid, $206K · 11 employees · 15 volunteers
| Name | Title | Hrs/wk | From org | From related | Other | Total | Orgs |
|---|---|---|---|---|---|---|---|
| MOLLY WHITE | CEO | 60 | $201,660 | $0 | $4,160 | $205,820 | 1 |
| WOODY KESSEL | Chairman | 5 | $0 | $0 | $0 | $0 | 1 |
| MARSHA DUGAN | VICE-CHAIRMAN | 5 | $0 | $0 | $0 | $0 | 1 |
| ELIZABETH FLORENCE | Secretary | 5 | $0 | $0 | $0 | $0 | 1 |
| DAVID HERBERT | Treasurer | 5 | $0 | $0 | $0 | $0 | 1 |
| DAVID BERMAN | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| JOHN BREKKA | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| MARTHA MONTAG BROWN | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| JOHN FITZPATRICK | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| JOEL REVILL | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| TODD STONE | Director | 1 | $0 | $0 | $0 | $0 | 1 |
2017 · 9 people listed · 1 paid, $206K · 7 employees · 40 volunteers
| Name | Title | Hrs/wk | From org | From related | Other | Total | Orgs |
|---|---|---|---|---|---|---|---|
| MOLLY WHITE | CEO | 60 | $201,991 | $0 | $4,049 | $206,040 | 1 |
| JEREMY KELLY | Chairman | 5 | $0 | $0 | $0 | $0 | 1 |
| WOODIE KESSEL | VICE-CHAIRMAN | 10 | $0 | $0 | $0 | $0 | 1 |
| DAVID HERBERT | Director | 2 | $0 | $0 | $0 | $0 | 1 |
| ELIZABETH FLORENCE | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| MARSHA DUGAN | Director | 0 | $0 | $0 | $0 | $0 | 1 |
| MARTHA MONTAG-BROWN | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| JOHN FITZPATRICK | Director | 1 | $0 | $0 | $0 | $0 | 1 |
| TODD STONE | Director | 1 | $0 | $0 | $0 | $0 | 1 |
2016 · 10 people listed · 1 paid, $204K · 9 employees · 40 volunteers
| Name | Title | Hrs/wk | From org | From related | Other | Total | Orgs |
|---|---|---|---|---|---|---|---|
| MOLLY WHITE | CEO | 60 | $201,588 | $0 | $2,385 | $203,973 | 1 |
| JEREMY KELLY | Chairman | 5 | $0 | $0 | $0 | $0 | 1 |
| WOODIE KESSEL | VICE-CHAIRMAN | 10 | $0 | $0 | $0 | $0 | 1 |
| DAVID HERBERT | Treasurer | 2 | $0 | $0 | $0 | $0 | 1 |
| ELIZABETH FLORENCE | Secretary | 1 | $0 | $0 | $0 | $0 | 1 |
| JOHN BREKKA | BOARD MEMBER | 0 | $0 | $0 | $0 | $0 | 1 |
| JOHN FITZPATRICK | BOARD MEMBER | 1 | $0 | $0 | $0 | $0 | 1 |
| TIM KAINE | BOARD MEMBER | 1 | $0 | $0 | $0 | $0 | 1 |
| MELVIN KOHN | BOARD MEMBER | 1 | $0 | $0 | $0 | $0 | 1 |
| TODD STONE | BOARD MEMBER | 1 | $0 | $0 | $0 | $0 | 1 |
2015 · 9 people listed · 1 paid, $205K · 7 employees · 40 volunteers
| Name | Title | Hrs/wk | From org | From related | Other | Total | Orgs |
|---|---|---|---|---|---|---|---|
| MOLLY WHITE | CEO | 60 | $195,958 | $0 | $9,455 | $205,413 | 1 |
| JEREMY KELLY | Chairman | 5 | $0 | $0 | $0 | $0 | 1 |
| WOODIE KESSEL | VICE-CHAIRMAN | 10 | $0 | $0 | $0 | $0 | 1 |
| DAVID HERBERT | Treasurer | 2 | $0 | $0 | $0 | $0 | 1 |
| ELIZABETH FLORENCE | Secretary | 1 | $0 | $0 | $0 | $0 | 1 |
| JOHN BREKKA | BOARD MEMBER | 1 | $0 | $0 | $0 | $0 | 1 |
| JOHN FITZPATRICK | BOARD MEMBER | 1 | $0 | $0 | $0 | $0 | 1 |
| TIM KAINE | BOARD MEMBER | 1 | $0 | $0 | $0 | $0 | 1 |
| MELVIN KOHN | BOARD MEMBER | 1 | $0 | $0 | $0 | $0 | 1 |
2014 · 10 people listed · 1 paid, $163K · 4 employees · 40 volunteers
| Name | Title | Hrs/wk | From org | From related | Other | Total | Orgs |
|---|---|---|---|---|---|---|---|
| MOLLY WHITE | Executive Dir. | 60 | $163,300 | $0 | $0 | $163,300 | 1 |
| JEREMY KELLY | Chairman | 7 | $0 | $0 | $0 | $0 | 1 |
| JOHN BREKKA | VICE-CHAIRMAN | 3 | $0 | $0 | $0 | $0 | 1 |
| JOHN FITZPATRICK | Treasurer | 0 | $0 | $0 | $0 | $0 | 1 |
| TIMOTHY M KAINE | BOARD MEMBER | 0 | $0 | $0 | $0 | $0 | 1 |
| ELIZABETH FLORENCE | BOARD MEMBER | 2 | $0 | $0 | $0 | $0 | 1 |
| DAVID HERBERT | BOARD MEMBER | 4 | $0 | $0 | $0 | $0 | 1 |
| TODD STONE | BOARD MEMBER | 0 | $0 | $0 | $0 | $0 | 1 |
| MELVIN KOHN | BOARD MEMBER | 3 | $0 | $0 | $0 | $0 | 1 |
| WOODIE KESSEL | BOARD MEMBER | 7 | $0 | $0 | $0 | $0 | 1 |
2013 · 11 people listed · 1 paid, $150K · 5 employees · 4 volunteers
| Name | Title | Hrs/wk | From org | From related | Other | Total | Orgs |
|---|---|---|---|---|---|---|---|
| MOLLY WHITE | Executive Direc | 40 | $150,000 | $0 | $0 | $150,000 | 1 |
| WOODIE KESSEL | BOARD MEMBER | 10 | $0 | $0 | $0 | $0 | 1 |
| MELVIN KOHN | BOARD MEMBER | 10 | $0 | $0 | $0 | $0 | 1 |
| JEREMY KELLY | Chairman | 4 | $0 | $0 | $0 | $0 | 1 |
| JOHN BREKKA | VICE-CHAIRMAN | 4 | $0 | $0 | $0 | $0 | 1 |
| JOHN FITZPATRICK | Treasurer | 1 | $0 | $0 | $0 | $0 | 1 |
| TIMOTHY M KAINE | BOARD MEMBER | 0 | $0 | $0 | $0 | $0 | 1 |
| ELIZABETH FLORENCE | BOARD MEMBER | 4 | $0 | $0 | $0 | $0 | 1 |
| ONA LOUISA MCCONNELL | BOARD MEMBER | 0 | $0 | $0 | $0 | $0 | 1 |
| TODD STONE | BOARD MEMBER | 2 | $0 | $0 | $0 | $0 | 1 |
| RICHARD WESTON | BOARD MEMBER | 0 | $0 | $0 | $0 | $0 | 1 |
2012 · 11 people listed · 1 paid, $141K · 5 employees · 15 volunteers
| Name | Title | Hrs/wk | From org | From related | Other | Total | Orgs |
|---|---|---|---|---|---|---|---|
| MOLLY WHITE | Executive Direc | 40 | $140,625 | $0 | $0 | $140,625 | 1 |
| MELVIN KOHN | BOARD MEMBER | 2 | $0 | $0 | $0 | $0 | 1 |
| WOODIE KESSEL | BOARD MEMBER | 3 | $0 | $0 | $0 | $0 | 1 |
| RICHARD WESTON | BOARD MEMBER | 0 | $0 | $0 | $0 | $0 | 1 |
| TODD STONE | BOARD MEMBER | 0 | $0 | $0 | $0 | $0 | 1 |
| ONA LOUISA MCCONNELL | BOARD MEMBER | 0 | $0 | $0 | $0 | $0 | 1 |
| ELIZABETH FLORENCE | BOARD MEMBER | 0 | $0 | $0 | $0 | $0 | 1 |
| TIMOTHY M KAINE | BOARD MEMBER | 0 | $0 | $0 | $0 | $0 | 1 |
| JOHN FITZPATRICK | Treasurer | 1 | $0 | $0 | $0 | $0 | 1 |
| JOHN BREKKA | VICE-CHAIRMAN | 5 | $0 | $0 | $0 | $0 | 1 |
| JEREMY KELLY | Chairman | 5 | $0 | $0 | $0 | $0 | 1 |
2011 · 9 people listed · 1 paid, $83K · 2 employees · 20 volunteers
| Name | Title | Hrs/wk | From org | From related | Other | Total | Orgs |
|---|---|---|---|---|---|---|---|
| LISA HARVEY | Executive Direc | 40 | $83,196 | $0 | $0 | $83,196 | 1 |
| RICHARD WESTON | BOARD MEMBER | 2 | $0 | $0 | $0 | $0 | 1 |
| TODD STONE | BOARD MEMBER | 2 | $0 | $0 | $0 | $0 | 1 |
| ONA LOUISA MCCONNELL | BOARD MEMBER | 2 | $0 | $0 | $0 | $0 | 1 |
| DON MACKENZIE | BOARD MEMBER | 5 | $0 | $0 | $0 | $0 | 1 |
| TIMOTHY M KAINE | BOARD MEMBER | 5 | $0 | $0 | $0 | $0 | 1 |
| JOHN FITZPATRICK | Treasurer | 5 | $0 | $0 | $0 | $0 | 1 |
| JOHN BREKKA | VICE-CHAIRMAN | 10 | $0 | $0 | $0 | $0 | 1 |
| JEREMY KELLY | Chairman | 10 | $0 | $0 | $0 | $0 | 1 |
Highest-paid independent contractors
No independent contractors reported.
Federal grants and contracts
Awards from USAspending.gov to a recipient with this organization's name and zip code. Obligations by federal fiscal year (October to September); each award links to its page on usaspending.gov.
| Fiscal year | Grants and other assistance | Contracts | Awards |
|---|---|---|---|
| 2021 | $0 | $0 | 1 |
Largest awards · 0 shown
| Year | Agency | Kind | Program | Description | Obligated |
|---|
State business registration
- MYOTONIC DYSTROPHY FOUNDATIONCORPORATION FL, Foreign nonprofit corporation (FORNP), Inactive, formed 2016-12-22
The same business name in the same state, from the state’s official registry data.
Trademarks
5 US trademarks, 5 live.
- Myotonic Dystrophy Foundation 5 marks, CA EXACT high confidence: identical full name and state
| Mark | Serial | Filed | Status | Source |
|---|---|---|---|---|
| INTERNATIONAL MYOTONIC DYSTROPHY AWARENESS DAY SEPTEMBER 15 | 99351375 | 2025-08-22 | Registered | TRTDXFAP, file of 2026-04-30 |
| INTERNATIONAL MYOTONIC DYSTROPHY AWARENESS DAY SEPTEMBER 15 | 99351373 | 2025-08-22 | Registered | TRTDXFAP, file of 2026-04-30 |
| MYOTONIC DYSTROPHY IN MOTION | 97402738 | 2022-05-10 | Registered | TRCFECO2, file of 2024-03-27 |
| MYOTONIC DYSTROPHY FOUNDATION | 88693516 | 2019-11-15 | Registered | TRTYRAP, file of 2026-04-03 |
| MYOTONIC MY CAUSE. MY CURE. | 88453990 | 2019-05-31 | Registered | TRTDXFAP, file of 2025-05-07 |
The newest marks of the trademark owners above, matched to this record by name (and state).
Federal lobbying
Lobbying Disclosure Act reports naming a client or registrant with this organization's name and state. Spent: what lobbying for it cost (firm income plus its own reported expenses). Earned: income it reported as a lobbying firm.
| Year | Spent | Earned | Reports |
|---|---|---|---|
| 2019 | $70,000 | 4 | |
| 2018 | $60,000 | 5 | |
| 2017 | 4 |
Issues: Health Issues, Defense, Medical/Disease Research/Clinical Labs
Firms hired: FAEGRE BAKER DANIELS CONSULTING
Who the money went to
Grants this organization reported paying: Schedule I Part II of the Form 990, or the grants-paid list on the 990-PF. Open a year for every recipient. Recipients link to their own page when the grant names an EIN we have (990-PF grants list no EIN, so those link only on an exact, unique name and state). Grants to individuals are counted; their names are not shown.
2024 · 9 grants to organizations · $848K
Listed grants add up to $847,600; the return's “grants paid” expense line says $1,008,046. Returns can differ here (grants paid vs. accrued, items listed elsewhere); check the filing.
2023 · 7 grants to organizations · $700K
2022 · 6 grants to organizations · $1.0M
2021 · 6 grants to organizations · $563K
Listed grants add up to $563,494; the return's “grants paid” expense line says $553,570. Returns can differ here (grants paid vs. accrued, items listed elsewhere); check the filing.
2020 · 3 grants to organizations · $117K
2019 · 3 grants to organizations · $168K
Listed grants add up to $167,840; the return's “grants paid” expense line says $501,662. Returns can differ here (grants paid vs. accrued, items listed elsewhere); check the filing.
2018 · 3 grants to organizations · $369K
Listed grants add up to $369,270; the return's “grants paid” expense line says $386,847. Returns can differ here (grants paid vs. accrued, items listed elsewhere); check the filing.
2017 · 1 grant to organizations · $102K
Listed grants add up to $102,000; the return's “grants paid” expense line says $72,185. Returns can differ here (grants paid vs. accrued, items listed elsewhere); check the filing.
2016 · 6 grants to organizations · $114K
Listed grants add up to $114,000; the return's “grants paid” expense line says $72,637. Returns can differ here (grants paid vs. accrued, items listed elsewhere); check the filing.
2015 · 4 grants to organizations · $185K
Listed grants add up to $185,000; the return's “grants paid” expense line says $41,977. Returns can differ here (grants paid vs. accrued, items listed elsewhere); check the filing.
2014 · 2 grants to organizations · $200K
Listed grants add up to $200,000; the return's “grants paid” expense line says $213,178. Returns can differ here (grants paid vs. accrued, items listed elsewhere); check the filing.
2013 · 3 grants to organizations · $210K
Listed grants add up to $210,410; the return's “grants paid” expense line says $224,403. Returns can differ here (grants paid vs. accrued, items listed elsewhere); check the filing.
2012 · 4 grants to organizations · $700K
2011 · 2 grants to organizations · $206K
Negative amounts are returned or refunded grants; they are listed last and left out of the totals of grants paid.
Who gave
Contributor names are not public for this form type.
Public charities filing Form 990 or 990-EZ report large donors on Schedule B, but the IRS withholds their names and addresses from public copies. Private foundations (990-PF) are different: their contributors are public.
Finances
Newest first. Each filing: its name on one row, its figures on the row beneath. Greyed filings are superseded by a later return for the same period and are left out everywhere else on this page.
| Revenue | Expenses | Assets | Net assets | Contributions | Program revenue | Officer pay | Employees | Volunteers |
|---|---|---|---|---|---|---|---|---|
| 2024 · Form 990 | ||||||||
| $3,659,795 | $3,754,033 | $5,826,049 | $3,908,143 | $3,637,697 | $1,624 | $257,057 | 14 | 90 |
| 2023 · Form 990 | ||||||||
| $2,448,480 | $3,791,128 | $5,467,413 | $4,001,932 | $2,324,783 | $82,999 | $264,348 | 10 | 90 |
| 2022 · Form 990 | ||||||||
| $2,774,035 | $2,506,145 | $6,830,491 | $5,342,280 | $2,774,635 | $66,768 | $247,902 | 5 | 104 |
| 2021 · Form 990 | ||||||||
| $2,383,618 | $1,490,525 | $5,846,076 | $5,059,438 | $2,409,559 | $23,300 | $237,006 | 5 | 90 |
| 2020 · Form 990 | ||||||||
| $1,947,806 | $1,124,779 | $4,489,179 | $4,166,521 | $1,987,042 | $26,106 | $232,668 | 4 | 60 |
| 2019 · Form 990 | ||||||||
| $2,271,866 | $2,248,284 | $3,955,407 | $3,346,364 | $1,672,633 | $75,663 | $244,046 | 5 | 180 |
| 2018 · Form 990 | ||||||||
| $2,183,628 | $2,021,676 | $3,794,207 | $3,322,386 | $2,080,997 | $68,225 | $205,820 | 11 | 15 |
| 2017 · Form 990 | ||||||||
| $3,237,856 | $1,998,957 | $3,288,895 | $3,159,653 | $3,016,393 | $205,789 | $206,040 | 7 | 40 |
| 2016 · Form 990 | ||||||||
| $1,805,876 | $1,972,327 | $2,063,066 | $1,920,754 | $1,551,282 | $206,241 | $203,973 | 9 | 40 |
| 2015 · Form 990 | ||||||||
| $2,139,511 | $1,350,125 | $2,299,688 | $2,087,205 | $2,113,561 | $24,525 | $205,413 | 7 | 40 |
| 2014 · Form 990 | ||||||||
| $727,525 | $1,088,137 | $1,642,464 | $1,297,819 | $696,805 | $28,534 | $163,300 | 4 | 40 |
| 2013 · Form 990 | ||||||||
| $1,482,366 | $985,541 | $2,085,873 | $1,658,431 | $1,464,729 | $16,180 | $150,000 | 5 | 4 |
| 2012 · Form 990 | ||||||||
| $737,501 | $1,312,365 | $1,699,136 | $1,161,606 | $726,874 | $10,308 | $140,625 | 5 | 15 |
| 2011 · Form 990 | ||||||||
| $1,602,362 | $736,160 | $1,890,239 | $1,736,470 | $1,602,055 | $0 | $83,196 | 2 | 20 |
Funders of this organization
84 grantors reported grants to this organization, $6,943,240 in all, tax years 2010 to 2025; the 25 largest shown (all 84). Exact: the grantor wrote this organization's EIN. Fuzzy: the grantor wrote only a name (foundations' 990-PF has no EIN field), matched to the same or a near-identical name in the same state; the name as filed is shown. From the latest return for each grantor and year, so amended returns aren't counted twice. CSV
| Grantor | Type | Match | Years given | Grants | Total | Latest year | Latest year's amount | Grants |
|---|---|---|---|---|---|---|---|---|
| FORGOOD INC | DAF sponsor | Exact | 2010-2024 | 17 | $2,454,719 | 2024 | $197,440 | show |
| DONOR ADVISED CHARITABLE GIVING | DAF sponsor | Exact | 2015-2024 | 10 | $899,252 | 2024 | $125,250 | show |
| FIDELITY INVESTMENTS CHARITABLE GIFT FUND | DAF sponsor | Exact | 2016-2024 | 9 | $469,875 | 2024 | $69,650 | show |
| NATIONAL PHILANTHROPIC TR | DAF sponsor | Exact | 2015-2018, 2020, 2022-2024 | 8 | $269,850 | 2024 | $138,100 | show |
| ATHENS AREA COMMUNITY FOUNDATION INC | DAF sponsor | Exact | 2016-2024 | 9 | $269,350 | 2024 | $38,350 | show |
| OREGON COMMUNITY FOUNDATION | DAF sponsor | Exact | 2014-2024 | 11 | $250,452 | 2024 | $63,000 | show |
| NATIONAL CHRISTIAN CHARITABLE FOUNDATION | DAF sponsor | Exact | 2013, 2015-2017, 2023-2024 | 6 | $222,942 | 2024 | $10,000 | show |
| GREATER HOUSTON COMMUNITY FOUNDATION | DAF sponsor | Exact | 2015, 2017 | 3 | $173,179 | 2017 | $73,179 | show |
| UTOPIA FUND | Private foundation | Fuzzy filed as “MYOTONIC DYSTROPHY FOUNDATION” | 2018-2024 | 7 | $140,000 | 2024 | $20,000 | show |
| MARY W HARRIMAN FOUNDATION | Private foundation | Fuzzy filed as “MYOTONIC DYSTROPHY FOUNDATION” | 2020-2024 | 5 | $130,000 | 2024 | $20,000 | show |
| AMERICAN ONLINE GIVING FOUNDATION INC | DAF sponsor | Exact | 2019-2025 | 7 | $125,040 | 2025 | $23,218 | show |
| ROUNDHOUSE FOUNDATION IRRV CHARITABLE TR | Private foundation | Fuzzy filed as “MYOTONIC DYSTROPHY FOUNDATION” | 2020-2024 | 5 | $125,000 | 2024 | $25,000 | show |
| SILICON VALLEY COMMUNITY FOUNDATION | DAF sponsor | Exact | 2013, 2020, 2023 | 3 | $125,000 | 2023 | $50,000 | show |
| GREYSTONE FOUNDATION | Private foundation | Fuzzy filed as “MYOTONIC DYSTROPHY FOUNDATION” | 2010-2012 | 14 | $91,250 | 2012 | $4,750 | show |
| MORGAN STANLEY GLOBAL IMPACT FUNDING TRUST INC | DAF sponsor | Exact | 2013-2016, 2019, 2021-2024 | 9 | $85,000 | 2024 | $20,000 | show |
| LESLIE AND SHEILA KLEIN FOUNDATION INC | Private foundation | Fuzzy filed as “MYOTONIC DYSTROPHY FOUNDATION” | 2022, 2025 | 2 | $82,500 | 2025 | $25,000 | show |
| WACO FOUNDATION | DAF sponsor | Exact | 2011-2015 | 5 | $79,840 | 2015 | $8,000 | show |
| CHARITIES AID FOUNDATION AMERICA | DAF sponsor | Exact | 2014-2016, 2018-2019, 2022, 2024 | 7 | $77,799 | 2024 | $5,966 | show |
| BRAD AND DANIELLE TILDEN FAMILY FOUNDATION | Private foundation | Fuzzy filed as “MYOTONIC DYSTROPHY FOUNDATION” | 2022-2025 | 4 | $70,000 | 2025 | $25,000 | show |
| AMERICAN ENDOWMENT FOUNDATION | DAF sponsor | Exact | 2021-2022, 2024 | 3 | $58,750 | 2024 | $14,750 | show |
| THE FEIL FAMILY FOUNDATION | Private foundation | Fuzzy filed as “MYOTONIC DYSTROPHY FOUNDATION” | 2022, 2024 | 2 | $55,000 | 2024 | $30,000 | show |
| PAYPAL CHARITABLE GIVING FUND | DAF sponsor | Exact | 2019, 2023-2024 | 3 | $54,165 | 2024 | $33,108 | show |
| KERMIT GITENSTEIN FOUNDATION INC | Private foundation | Fuzzy filed as “MYOTONIC DYSTROPHY FOUNDATION” | 2014 | 1 | $50,000 | 2014 | $50,000 | show |
| BARON CAPITAL FOUNDATION | Private foundation | Fuzzy filed as “MYOTONIC DYSTROPHY FOUNDATION” | 2022, 2024 | 2 | $45,000 | 2024 | $35,000 | show |
| FELKER FAMILY FOUNDATION INC | Private foundation | Fuzzy filed as “Myotonic Dystrophy Foundation” | 2013-2018 | 6 | $45,000 | 2018 | $10,000 | show |
Similar organizations
Ranked without any AI: same NTEE code first, then the same NTEE group; then revenue within 2x, 5x or 10x; then the same state; then similar name and mission text. Same state only · More (100)
| Organization | State | NTEE | Latest revenue | Latest expenses | Top-paid title | Top pay | Why similar |
|---|---|---|---|---|---|---|---|
| VIKING CHARITIES INC | CA | G40 | $2,308,723 | $325,082 | VICE CHIEF | $0 | Same NTEE code G40, revenue within 2x, same state |
| SJOGRENS FOUNDATION INC | VA | G40 | $5,277,586 | $4,223,979 | PRESIDENT AND CEO | $368,360 | Same NTEE code G40, revenue within 2x |
| WOOLLEY INSTITUTE FOR SPOKEN- LANGUAGE AND EDUCATION | AL | G40 | $3,126,692 | $2,665,502 | EXECUTIVE DIRECTOR | $177,192 | Same NTEE code G40, revenue within 2x |
| BEYOND CELIAC | PA | G40 | $3,102,549 | $2,741,752 | EXECUTIVE DIRECTOR | $350,333 | Same NTEE code G40, revenue within 2x |
| A GIVING HAND ORG INC | NJ | G40 | $2,736,729 | $2,840,162 | TRUSTEE | $0 | Same NTEE code G40, revenue within 2x |
| CARDIAC THERAPY FOUNDATION OF THE MIDPENINSULA | CA | G40 | $800,237 | $741,782 | PROGRAM DIRECTOR | $132,255 | Same NTEE code G40, revenue within 5x, same state |
| FATTY LIVER FOUNDATION | ID | G40 | $1,016,824 | $628,808 | EXECUTIVE DIRECTOR | $126,000 | Same NTEE code G40, revenue within 5x |
| LETS WIN PANCREATIC CANCER FOUNDATION | NY | G40 | $1,716,583 | $1,149,972 | CEO /Co-Founder | $100,000 | Same NTEE code G40, revenue within 5x |
| KIRK H AND JOANN P GIBSON FAMILY FOUNDATION FOR PARKINSONS RESEARCH | MI | G40 | $7,658,722 | $1,275,293 | CEO & DIRECTOR | $244,433 | Same NTEE code G40, revenue within 5x |
| AMERICAN ASSOCIATION FOR THE STUDY OF LIVER DISEASES | VA | G40 | $18,281,444 | $20,311,953 | CHIEF EXECUTIVE OFFICER | $746,906 | Same NTEE code G40, revenue within 5x |
| IMPACT MELANOMA INC | MA | G40 | $1,428,897 | $1,394,030 | EXECUTIVE DIRECTOR | $203,176 | Same NTEE code G40, revenue within 5x |
| DIALYSIS & KIDNEY TRANSPLANT FUND INC | OH | G40 | $1,204,818 | $933,780 | CHAIRMAN | $0 | Same NTEE code G40, revenue within 5x |
| OKLAHOMA PROJECT WOMAN INC | OK | G40 | $1,209,939 | $1,507,526 | EXECUTIVE DI | $104,061 | Same NTEE code G40, revenue within 5x |
| PROSTATE CANCER EDUCATION COUNCIL | CO | G40 | $1,661,107 | $887,735 | PRESIDENT | $54,000 | Same NTEE code G40, revenue within 5x |
| EMATAI INC | NY | G40 | $1,067,366 | $527,754 | Executive Dir. | $171,990 | Same NTEE code G40, revenue within 5x |
| PARIS PREGNANCY CARE CENTER INC | TX | G40 | $1,166,750 | $690,536 | Executive Dir. | $63,033 | Same NTEE code G40, revenue within 5x |
| HEAL CHILD SKIN DISEASE FOUNDATION | CA | G40 | $484,982 | $261,170 | MANAGER | $0 | Same NTEE code G40, revenue within 10x, same state |
| VACCINE RESEARCH FOUNDATION | CA | G40 | $680,364 | $125,579 | CEO Director | $0 | Same NTEE code G40, revenue within 10x, same state |
| AICP FOUNDATION | NY | G40 | $613,188 | $47,642 | DIRECTORPRESIDENT | $0 | Same NTEE code G40, revenue within 10x |
| MAC PARKMAN FOUNDATION FOR ADOLESCENT CONCUSSIVE TRAUMA INC | FL | G40 | $487,378 | $578,353 | PRESIDENT | $0 | Same NTEE code G40, revenue within 10x |
| DYSPHONIA INTERNATIONAL INC | IL | G40 | $721,322 | $484,521 | EXECUTIVE DI | $103,750 | Same NTEE code G40, revenue within 10x |
| ADVANCING INNOVATION IN DERMATOLOGY INC | NJ | G40 | $567,490 | $564,571 | EXECUTIVE DIRECTOR & CFO | $111,507 | Same NTEE code G40, revenue within 10x |
| COMMUNITY LIVER ALLIANCE | PA | G40 | $689,189 | $798,018 | CHIEF EXECUTIVE OFFICER | $140,000 | Same NTEE code G40, revenue within 10x |
| NORTH CHARLESTON DENTAL OUTREACH | SC | G40 | $619,128 | $646,572 | Executive Director | $115,958 | Same NTEE code G40, revenue within 10x |
| LETS TALK MENOPAUSE INC | NY | G40 | $600,212 | $501,266 | CO-FOUNDER A | $0 | Same NTEE code G40, revenue within 10x |
Who funds organizations like this
Grantors that funded the 100 most similar organizations. Ranked by total given to them. Foundations (990-PF) and donor-advised fund sponsors only. Same matching as Funders above (by EIN, or by name for foundations).
The full list · all similar organizations
Where the money went
Every expense line on each return, biggest first: Form 990 Part IX (with its program, management and fundraising columns), 990-EZ Part I, or 990-PF Part I. Event marks lines the organization itself describes as events. “Events” in each summary adds those lines, conferences and meetings, and the direct costs of fundraising events. Unusual is not the same as improper. Many of these patterns have ordinary explanations. Check the filing.
2024 · Form 990 · $3,754,033 spent · pay $1,572,229 · grants $1,008,046 · events $730,802
| Line | As described | Total | Program | Management | Fundraising | Share |
|---|---|---|---|---|---|---|
| Other salaries and wages | $1,136,135 | $921,693 | $48,924 | $165,518 | 30.3% | |
| Grants to US organizations and governments | $849,721 | $849,721 | - | - | 22.6% | |
| Conferences, conventions and meetings | $551,463 | $509,846 | $28,162 | $13,455 | 14.7% | |
| Fees: other services | $303,840 | $236,428 | $65,115 | $2,297 | 8.1% | |
| Pay: officers, directors, trustees, key employees | $257,057 | $208,539 | $11,069 | $37,449 | 6.8% | |
| Other (as described) | ADMINISTRATION | $201,573 | $168,725 | $29,521 | $3,327 | 5.4% |
| Grants outside the US | $158,325 | $158,325 | - | - | 4.2% | |
| Payroll taxes | $100,316 | $81,381 | $4,320 | $14,615 | 2.7% | |
| Other employee benefits | $78,721 | $63,863 | $3,390 | $11,468 | 2.1% | |
| Occupancy | $33,582 | $29,394 | $203 | $3,985 | 0.9% | |
| Other (as described) | Printing and Publications | $28,112 | $23,531 | $4,117 | $464 | 0.7% |
| Information technology | $27,824 | $21,246 | $4,858 | $1,720 | 0.7% | |
| Fees: accounting | $17,280 | $13,195 | $3,017 | $1,068 | 0.5% | |
| Other (as described) | Postage and Shipping | $5,290 | $4,428 | $775 | $87 | 0.1% |
| Insurance | $4,550 | $3,314 | $580 | $656 | 0.1% | |
| Other (as described) | MISCELLANEOUS | $244 | - | $29 | $215 | 0.0% |
| Fundraising events Event | direct expenses; gross income - | $179,339 | reported apart | |||
| Total | $3,754,033 | 100% |
2023 · Form 990 · $3,791,128 spent · pay $979,808 · grants $701,687 · events $888,077
| Line | As described | Total | Program | Management | Fundraising | Share |
|---|---|---|---|---|---|---|
| Conferences, conventions and meetings | $745,148 | $690,513 | $49,184 | $5,451 | 19.7% | |
| Grants to US organizations and governments | $701,687 | $701,687 | - | - | 18.5% | |
| Other (as described) | UNCOLLECTIBLE ACCOUNTS | $644,784 | $10,000 | $632,731 | $2,053 | 17.0% |
| Other salaries and wages | $590,992 | $496,551 | $41,251 | $53,190 | 15.6% | |
| Fees: other services | $517,285 | $384,254 | $56,638 | $76,393 | 13.6% | |
| Pay: officers, directors, trustees, key employees | $264,348 | $222,105 | $18,452 | $23,791 | 7.0% | |
| Other (as described) | ADMINISTRATION | $64,461 | $31,013 | $16,365 | $17,083 | 1.7% |
| Payroll taxes | $63,069 | $52,991 | $4,402 | $5,676 | 1.7% | |
| Other employee benefits | $61,399 | $51,587 | $4,286 | $5,526 | 1.6% | |
| Information technology | $40,512 | $30,093 | $4,436 | $5,983 | 1.1% | |
| Occupancy | $28,805 | $23,409 | $2,887 | $2,509 | 0.8% | |
| Fees: accounting | $19,995 | $14,853 | $2,189 | $2,953 | 0.5% | |
| Other (as described) | Postage and Shipping | $17,405 | $8,373 | $4,419 | $4,613 | 0.5% |
| Other (as described) | Printing and Publications | $14,664 | $7,055 | $3,723 | $3,886 | 0.4% |
| All other expenses | $12,300 | - | $12,300 | - | 0.3% | |
| Insurance | $4,274 | $2,056 | $1,085 | $1,133 | 0.1% | |
| Fundraising events Event | direct expenses; gross income - | $142,929 | reported apart | |||
| Total | $3,791,128 | 100% |
2022 · Form 990 · $2,506,145 spent · pay $646,166 · grants $1,048,270 · events $467,425
| Line | As described | Total | Program | Management | Fundraising | Share |
|---|---|---|---|---|---|---|
| Grants to US organizations and governments | $1,048,270 | $1,048,270 | - | - | 41.8% | |
| Conferences, conventions and meetings | $369,135 | $367,887 | $1,248 | - | 14.7% | |
| Other salaries and wages | $348,019 | $292,140 | $24,547 | $31,332 | 13.9% | |
| Fees: other services | $329,088 | $246,588 | $41,965 | $40,535 | 13.1% | |
| Pay: officers, directors, trustees, key employees | $247,902 | $208,098 | $17,485 | $22,319 | 9.9% | |
| Payroll taxes | $40,507 | $34,003 | $2,857 | $3,647 | 1.6% | |
| Other (as described) | ADMINISTRATION | $40,072 | $28,604 | $11,468 | - | 1.6% |
| Occupancy | $25,017 | $20,580 | $2,232 | $2,205 | 1.0% | |
| Fees: accounting | $18,795 | $13,711 | $2,453 | $2,631 | 0.7% | |
| Other (as described) | Postage and Shipping | $16,065 | $7,329 | $2,939 | $5,797 | 0.6% |
| Other employee benefits | $9,738 | $8,174 | $687 | $877 | 0.4% | |
| Other (as described) | Printing and Publications | $9,483 | $4,326 | $1,735 | $3,422 | 0.4% |
| Fees: legal | $2,200 | $1,605 | $287 | $308 | 0.1% | |
| Insurance | $1,768 | $807 | $323 | $638 | 0.1% | |
| Information technology | $86 | $63 | $11 | $12 | 0.0% | |
| Fundraising events Event | direct expenses; gross income - | $98,290 | reported apart | |||
| Total | $2,506,145 | 100% |
2021 · Form 990 · $1,490,525 spent · pay $605,089 · grants $553,570 · events $85,354
| Line | As described | Total | Program | Management | Fundraising | Share |
|---|---|---|---|---|---|---|
| Grants to US organizations and governments | $553,570 | $553,570 | - | - | 37.1% | |
| Other salaries and wages | $313,624 | $239,811 | $49,870 | $23,943 | 21.0% | |
| Pay: officers, directors, trustees, key employees | $237,006 | $181,225 | $37,687 | $18,094 | 15.9% | |
| Fees: other services | $190,915 | $161,330 | $24,937 | $4,648 | 12.8% | |
| Other (as described) | ADMINISTRATION | $40,702 | $31,113 | $9,589 | - | 2.7% |
| Payroll taxes | $37,561 | $28,720 | $5,973 | $2,868 | 2.5% | |
| Conferences, conventions and meetings | $35,844 | $35,844 | - | - | 2.4% | |
| Occupancy | $24,605 | $21,071 | $1,587 | $1,947 | 1.7% | |
| Fees: accounting | $17,475 | $12,973 | $2,006 | $2,496 | 1.2% | |
| Other employee benefits | $16,898 | $12,921 | $2,687 | $1,290 | 1.1% | |
| Other (as described) | Printing and Publications | $9,614 | $6,629 | $2,043 | $942 | 0.6% |
| Insurance | $7,696 | $4,292 | $1,323 | $2,081 | 0.5% | |
| Other (as described) | Postage and Shipping | $4,353 | $3,133 | $966 | $254 | 0.3% |
| Information technology | $662 | $491 | $76 | $95 | 0.0% | |
| Fundraising events Event | direct expenses; gross income - | $49,510 | reported apart | |||
| Total | $1,490,525 | 100% |
2020 · Form 990 · $1,124,779 spent · pay $573,340 · grants $117,329 · events $74,015
| Line | As described | Total | Program | Management | Fundraising | Share |
|---|---|---|---|---|---|---|
| Other salaries and wages | $301,360 | $271,224 | $15,068 | $15,068 | 26.8% | |
| Fees: other services | $252,983 | $187,011 | $54,973 | $10,999 | 22.5% | |
| Pay: officers, directors, trustees, key employees | $232,668 | $209,402 | $11,633 | $11,633 | 20.7% | |
| Grants to US organizations and governments | $117,329 | $117,329 | - | - | 10.4% | |
| Other (as described) | ADMINISTRATION | $64,493 | $31,407 | $8,542 | $24,544 | 5.7% |
| Occupancy | $37,600 | $33,840 | $1,880 | $1,880 | 3.3% | |
| Payroll taxes | $34,176 | $30,758 | $1,709 | $1,709 | 3.0% | |
| Fees: accounting | $31,988 | $23,646 | $6,951 | $1,391 | 2.8% | |
| Other (as described) | Printing and Publications | $16,512 | $8,051 | $2,190 | $6,271 | 1.5% |
| Other (as described) | Postage and Shipping | $14,637 | $7,137 | $1,941 | $5,559 | 1.3% |
| Information technology | $5,918 | $4,375 | $1,286 | $257 | 0.5% | |
| Other employee benefits | $5,136 | $4,622 | $257 | $257 | 0.5% | |
| Insurance | $4,300 | $2,097 | $570 | $1,633 | 0.4% | |
| Fees: legal | $3,335 | $2,465 | $725 | $145 | 0.3% | |
| Conferences, conventions and meetings | $2,344 | $1,254 | $154 | $936 | 0.2% | |
| Fundraising events Event | direct expenses; gross income - | $71,671 | reported apart | |||
| Total | $1,124,779 | 100% |
2019 · Form 990 · $2,248,284 spent · pay $598,551 · grants $501,662 · events $590,085
| Line | As described | Total | Program | Management | Fundraising | Share |
|---|---|---|---|---|---|---|
| Fees: other services | $563,306 | $444,295 | $91,481 | $27,530 | 25.1% | |
| Grants outside the US | $329,822 | $329,822 | - | - | 14.7% | |
| Conferences, conventions and meetings | $324,596 | $187,876 | $14,094 | $122,626 | 14.4% | |
| Other salaries and wages | $282,015 | $225,610 | $16,922 | $39,483 | 12.5% | |
| Pay: officers, directors, trustees, key employees | $244,046 | $195,237 | $14,643 | $34,166 | 10.9% | |
| Grants to US organizations and governments | $171,840 | $171,840 | - | - | 7.6% | |
| Other (as described) | ADMINISTRATION | $81,852 | $37,394 | $12,031 | $32,427 | 3.6% |
| Occupancy | $52,990 | $42,428 | $3,142 | $7,420 | 2.4% | |
| Payroll taxes | $51,189 | $40,952 | $3,071 | $7,166 | 2.3% | |
| Other (as described) | Printing and Publications | $42,903 | $19,600 | $6,306 | $16,997 | 1.9% |
| Fees: accounting | $29,147 | $22,990 | $4,733 | $1,424 | 1.3% | |
| Other employee benefits | $21,301 | $17,041 | $1,278 | $2,982 | 0.9% | |
| Fees: legal | $16,781 | $13,236 | $2,725 | $820 | 0.7% | |
| Information technology | $16,245 | $12,813 | $2,638 | $794 | 0.7% | |
| Other (as described) | Postage and Shipping | $13,966 | $6,380 | $2,053 | $5,533 | 0.6% |
| Insurance | $6,285 | $2,871 | $924 | $2,490 | 0.3% | |
| Fundraising events Event | direct expenses; gross income $772,499 | $265,489 | reported apart | |||
| Total | $2,248,284 | 100% |
2018 · Form 990 · $2,021,676 spent · pay $741,161 · grants $386,847 · events $456,055
| Line | As described | Total | Program | Management | Fundraising | Share |
|---|---|---|---|---|---|---|
| Other salaries and wages | $447,736 | $358,171 | $26,864 | $62,701 | 22.1% | |
| Grants to US organizations and governments | $356,847 | $356,847 | - | - | 17.7% | |
| Fees: other services | $337,948 | $259,256 | $53,145 | $25,547 | 16.7% | |
| Conferences, conventions and meetings | $332,086 | $220,048 | $16,694 | $95,344 | 16.4% | |
| Pay: officers, directors, trustees, key employees | $205,820 | $164,647 | $12,349 | $28,824 | 10.2% | |
| Other (as described) | ADMINISTRATION | $88,535 | $28,093 | $37,609 | $22,833 | 4.4% |
| Occupancy | $54,094 | $43,192 | $3,343 | $7,559 | 2.7% | |
| Payroll taxes | $52,058 | $41,644 | $3,124 | $7,290 | 2.6% | |
| Other employee benefits | $35,547 | $28,436 | $2,133 | $4,978 | 1.8% | |
| Grants outside the US | $30,000 | $30,000 | - | - | 1.5% | |
| Fees: accounting | $25,335 | $19,436 | $3,984 | $1,915 | 1.3% | |
| Other (as described) | Printing and Publications | $22,798 | $7,235 | $9,684 | $5,879 | 1.1% |
| Information technology | $13,834 | $10,612 | $2,176 | $1,046 | 0.7% | |
| Other (as described) | Postage and Shipping | $8,758 | $2,779 | $3,720 | $2,259 | 0.4% |
| Fees: legal | $6,362 | $4,881 | $1,000 | $481 | 0.3% | |
| Insurance | $3,918 | $1,244 | $1,664 | $1,010 | 0.2% | |
| Fundraising events Event | direct expenses; gross income $149,926 | $123,969 | reported apart | |||
| Total | $2,021,676 | 100% |
2017 · Form 990 · $1,998,957 spent · pay $793,161 · grants $72,185 · events $683,465
| Line | As described | Total | Program | Management | Fundraising | Share |
|---|---|---|---|---|---|---|
| Conferences, conventions and meetings | $610,247 | $512,809 | $11,128 | $86,310 | 30.5% | |
| Other salaries and wages | $535,614 | $428,491 | $32,138 | $74,985 | 26.8% | |
| Fees: other services | $304,044 | $253,612 | $28,393 | $22,039 | 15.2% | |
| Pay: officers, directors, trustees, key employees | $206,040 | $164,832 | $12,362 | $28,846 | 10.3% | |
| Other (as described) | ADMINISTRATION | $86,048 | $30,868 | $14,345 | $40,835 | 4.3% |
| Grants to US organizations and governments | $72,185 | $72,185 | - | - | 3.6% | |
| Payroll taxes | $51,507 | $41,206 | $3,090 | $7,211 | 2.6% | |
| Occupancy | $49,831 | $39,901 | $2,929 | $7,001 | 2.5% | |
| Information technology | $25,618 | $19,965 | $3,918 | $1,735 | 1.3% | |
| Other (as described) | Printing and Publications | $21,708 | $7,151 | $5,097 | $9,460 | 1.1% |
| Fees: accounting | $16,000 | - | $16,000 | - | 0.8% | |
| Other (as described) | Postage and Shipping | $9,076 | $2,990 | $2,131 | $3,955 | 0.5% |
| Insurance | $5,666 | - | $5,666 | - | 0.3% | |
| Fees: legal | $5,373 | - | $5,373 | - | 0.3% | |
| Fundraising events Event | direct expenses; gross income $85,800 | $73,218 | reported apart | |||
| Total | $1,998,957 | 100% |
2016 · Form 990 · $1,972,327 spent · pay $901,265 · grants $72,637 · events $417,716
| Line | As described | Total | Program | Management | Fundraising | Share |
|---|---|---|---|---|---|---|
| Other salaries and wages | $638,475 | $523,878 | $34,880 | $79,717 | 32.4% | |
| Fees: other services | $452,940 | $386,462 | $36,550 | $29,928 | 23.0% | |
| Conferences, conventions and meetings | $342,583 | $262,629 | $16,114 | $63,840 | 17.4% | |
| Pay: officers, directors, trustees, key employees | $203,973 | $167,360 | $11,137 | $25,476 | 10.3% | |
| Other (as described) | ADMINISTRATION | $72,977 | $33,782 | $12,355 | $26,840 | 3.7% |
| Grants to US organizations and governments | $72,637 | $72,637 | - | - | 3.7% | |
| Payroll taxes | $58,817 | $48,260 | $3,213 | $7,344 | 3.0% | |
| Occupancy | $45,035 | $36,064 | $2,667 | $6,304 | 2.3% | |
| Information technology | $33,637 | $27,714 | $3,777 | $2,146 | 1.7% | |
| Other (as described) | Printing and Publications | $24,017 | $11,307 | $4,480 | $8,230 | 1.2% |
| Fees: accounting | $15,825 | - | $15,825 | - | 0.8% | |
| Other (as described) | Postage and Shipping | $6,739 | $3,173 | $1,257 | $2,309 | 0.3% |
| Insurance | $4,375 | $2,117 | $2,258 | - | 0.2% | |
| Fees: legal | $297 | - | $297 | - | 0.0% | |
| Fundraising events Event | direct expenses; gross income $121,800 | $75,133 | reported apart | |||
| Total | $1,972,327 | 100% |
2015 · Form 990 · $1,350,125 spent · pay $658,168 · grants $41,977 · events $138,705
| Line | As described | Total | Program | Management | Fundraising | Share |
|---|---|---|---|---|---|---|
| Other salaries and wages | $412,389 | $354,100 | $30,676 | $27,613 | 30.5% | |
| Fees: other services | $338,492 | $255,047 | $72,384 | $11,061 | 25.1% | |
| Pay: officers, directors, trustees, key employees | $205,413 | $176,378 | $15,281 | $13,754 | 15.2% | |
| Conferences, conventions and meetings | $138,705 | $125,738 | $11,734 | $1,233 | 10.3% | |
| Other (as described) | ADMINISTRATION | $53,584 | $31,282 | $14,241 | $8,061 | 4.0% |
| Occupancy | $46,293 | $38,364 | $3,666 | $4,263 | 3.4% | |
| Payroll taxes | $40,366 | $34,660 | $3,003 | $2,703 | 3.0% | |
| Grants to US organizations and governments | $31,977 | $31,977 | - | - | 2.4% | |
| Other (as described) | Printing and Publications | $25,624 | $14,339 | $7,581 | $3,704 | 1.9% |
| Information technology | $16,023 | $8,966 | $4,741 | $2,316 | 1.2% | |
| Other (as described) | Postage and Shipping | $11,017 | $6,165 | $3,260 | $1,592 | 0.8% |
| Grants outside the US | $10,000 | $10,000 | - | - | 0.7% | |
| Fees: accounting | $9,800 | - | $9,800 | - | 0.7% | |
| Fees: legal | $8,124 | - | $8,124 | - | 0.6% | |
| Insurance | $2,318 | - | $2,318 | - | 0.2% | |
| Total | $1,350,125 | 100% |
2014 · Form 990 · $1,088,137 spent · pay $364,087 · grants $213,178 · events $17,867
| Line | As described | Total | Program | Management | Fundraising | Share |
|---|---|---|---|---|---|---|
| Fees: other services | $231,657 | $155,708 | $60,927 | $15,022 | 21.3% | |
| Grants to US organizations and governments | $213,178 | $213,178 | - | - | 19.6% | |
| Other (as described) | ADMINISTRATION | $197,308 | $146,788 | $34,280 | $16,240 | 18.1% |
| Pay: officers, directors, trustees, key employees | $163,300 | $124,108 | $22,862 | $16,330 | 15.0% | |
| Other salaries and wages | $157,166 | $119,446 | $22,003 | $15,717 | 14.4% | |
| Payroll taxes | $22,596 | $17,173 | $3,163 | $2,260 | 2.1% | |
| Other employee benefits | $21,025 | $15,979 | $2,944 | $2,102 | 1.9% | |
| Occupancy | $17,280 | $13,133 | $2,419 | $1,728 | 1.6% | |
| Information technology | $15,308 | $14,775 | $533 | - | 1.4% | |
| Other (as described) | AUDIO/VISUAL | $12,816 | $12,816 | - | - | 1.2% |
| Other (as described) Event | EVENT EXPENSES | $12,468 | $9,386 | - | $3,082 | 1.1% |
| Fees: accounting | $9,865 | $6,608 | $2,620 | $637 | 0.9% | |
| Conferences, conventions and meetings | $5,399 | $3,628 | $1,771 | - | 0.5% | |
| Fees: legal | $4,695 | $3,145 | $1,247 | $303 | 0.4% | |
| Advertising and promotion | $1,734 | $1,047 | $687 | - | 0.2% | |
| Insurance | $1,290 | - | $1,290 | - | 0.1% | |
| Other (as described) | DUES & SUBSCRIPTIONS | $1,052 | $400 | $575 | $77 | 0.1% |
| Total | $1,088,137 | 100% |
2013 · Form 990 · $985,541 spent · pay $250,172 · grants $224,403 · events $1,867
| Line | As described | Total | Program | Management | Fundraising | Share |
|---|---|---|---|---|---|---|
| Other (as described) | ADMINISTRATION | $214,950 | $86,119 | $47,060 | $81,771 | 21.8% |
| Grants to US organizations and governments | $214,403 | $214,403 | - | - | 21.8% | |
| Fees: other services | $212,572 | $151,267 | $40,079 | $21,226 | 21.6% | |
| Pay: officers, directors, trustees, key employees | $150,000 | $123,000 | $18,000 | $9,000 | 15.2% | |
| Other salaries and wages | $72,970 | $59,835 | $8,757 | $4,378 | 7.4% | |
| Other (as described) | AUDIO/VISUAL | $20,413 | $18,600 | - | $1,813 | 2.1% |
| Occupancy | $19,585 | $16,060 | $2,350 | $1,175 | 2.0% | |
| Payroll taxes | $16,407 | $13,454 | $1,969 | $984 | 1.7% | |
| Fees: legal | $11,738 | $8,353 | $2,213 | $1,172 | 1.2% | |
| Other employee benefits | $10,795 | $8,852 | $1,295 | $648 | 1.1% | |
| Grants outside the US | $10,000 | $10,000 | - | - | 1.0% | |
| Fees: accounting | $9,865 | $7,020 | $1,860 | $985 | 1.0% | |
| Information technology | $7,904 | $4,694 | $1,926 | $1,284 | 0.8% | |
| Other (as described) | RELOCATION | $3,901 | - | $3,901 | - | 0.4% |
| Insurance | $3,087 | - | $3,087 | - | 0.3% | |
| Advertising and promotion | $2,541 | $1,749 | $514 | $278 | 0.3% | |
| Other (as described) | FURNITURE & EQUIPMENT | $1,993 | - | $1,993 | - | 0.2% |
| Conferences, conventions and meetings | $1,867 | $1,867 | - | - | 0.2% | |
| All other expenses | $550 | $400 | $150 | - | 0.1% | |
| Total | $985,541 | 100% |
2012 · Form 990 · $1,312,365 spent · pay $301,093 · grants $701,500 · events $1,262
| Line | As described | Total | Program | Management | Fundraising | Share |
|---|---|---|---|---|---|---|
| Grants to US organizations and governments | $701,500 | $701,500 | - | - | 53.5% | |
| Pay: officers, directors, trustees, key employees | $140,625 | $93,910 | $26,103 | $20,612 | 10.7% | |
| Other salaries and wages | $119,234 | $79,625 | $22,133 | $17,476 | 9.1% | |
| Other (as described) | ADMINISTRATION | $117,503 | $91,583 | $18,378 | $7,542 | 9.0% |
| Fees: other services | $61,869 | $36,747 | $13,540 | $11,582 | 4.7% | |
| Fees: legal | $55,201 | $32,787 | $12,081 | $10,333 | 4.2% | |
| Occupancy | $24,469 | $17,077 | $3,644 | $3,748 | 1.9% | |
| Other employee benefits | $22,822 | $15,241 | $4,236 | $3,345 | 1.7% | |
| Other (as described) | AUDIO/VISUAL | $18,894 | $18,377 | $517 | - | 1.4% |
| Payroll taxes | $18,412 | $12,850 | $2,742 | $2,820 | 1.4% | |
| Fees: accounting | $10,700 | $6,355 | $2,342 | $2,003 | 0.8% | |
| Other (as described) | EMPLOYMENT AND HUMAN RESOURCES | $6,045 | $4,219 | $900 | $926 | 0.5% |
| Other (as described) | FURNITURE & EQUIPMENT | $5,030 | $3,511 | $749 | $770 | 0.4% |
| Information technology | $3,061 | $2,136 | $456 | $469 | 0.2% | |
| Insurance | $2,215 | $1,546 | $330 | $339 | 0.2% | |
| Advertising and promotion | $2,174 | $1,517 | $324 | $333 | 0.2% | |
| All other expenses | $1,349 | $941 | $201 | $207 | 0.1% | |
| Conferences, conventions and meetings | $1,262 | $881 | $188 | $193 | 0.1% | |
| Total | $1,312,365 | 100% |
2011 · Form 990 · $736,160 spent · pay $153,183 · grants $208,273 · events $98,552
| Line | As described | Total | Program | Management | Fundraising | Share |
|---|---|---|---|---|---|---|
| Grants to US organizations and governments | $208,273 | $208,273 | - | - | 28.3% | |
| Other (as described) | ADMINISTRATION | $112,436 | $62,557 | $28,784 | $21,095 | 15.3% |
| Conferences, conventions and meetings | $98,552 | $97,402 | - | $1,150 | 13.4% | |
| Pay: officers, directors, trustees, key employees | $83,196 | $47,873 | $26,015 | $9,308 | 11.3% | |
| Fees: other services | $57,000 | - | $57,000 | - | 7.7% | |
| Other salaries and wages | $47,240 | $27,183 | $14,772 | $5,285 | 6.4% | |
| Other (as described) | AUDIO/VISUAL | $36,882 | $31,705 | - | $5,177 | 5.0% |
| Advertising and promotion | $16,461 | $7,622 | $1,344 | $7,495 | 2.2% | |
| Occupancy | $15,128 | - | $15,128 | - | 2.1% | |
| Fees: legal | $14,440 | $14,440 | - | - | 2.0% | |
| Other employee benefits | $12,328 | $7,094 | $3,855 | $1,379 | 1.7% | |
| Payroll taxes | $10,419 | $5,939 | $3,270 | $1,210 | 1.4% | |
| Fees: accounting | $9,800 | - | $9,800 | - | 1.3% | |
| Information technology | $7,488 | $7,465 | $23 | - | 1.0% | |
| Other (as described) | FURNITURE & EQUIPMENT | $2,473 | - | $2,473 | - | 0.3% |
| Insurance | $2,273 | - | $2,173 | $100 | 0.3% | |
| Other (as described) | UTILITIES | $973 | - | $973 | - | 0.1% |
| Other (as described) | DUES & SUBSCRIPTIONS | $798 | - | $798 | - | 0.1% |
| Total | $736,160 | 100% |
Comments