Nonprofit · EIN 13-3349872
HUNTINGTONS DISEASE SOCIETY OF AMERICA INC
Tax-exempt · NEW YORK, NY 10018
Financials
| Year ended | Form | Revenue | Expenses | Net income | Total assets | Liabilities | Net assets |
|---|---|---|---|---|---|---|---|
| December 31, 2025 | 990 | $11,232,523 | $9,444,908 | $1,787,615 | $17,930,550 | $3,514,460 | $14,416,090 |
| December 31, 2024 | 990 | $10,174,088 | $11,385,673 | -$1,211,585 | $17,255,243 | $4,612,999 | $12,642,244 |
| December 31, 2023 | 990 | $9,833,936 | $11,157,448 | -$1,323,512 | $18,147,360 | $4,277,717 | $13,869,643 |
| December 31, 2021 | 990 | $12,200,152 | $7,945,111 | $4,255,041 | $15,786,342 | $1,883,279 | $13,903,063 |
Financial details: 990 for the year ended December 31, 2025
Revenue
- Contributions, gifts and grants
- $11,378,212
- Program service revenue
- $0
- Investment income
- $278,265
- Net gain from sales of assets
- $62,743
- Other revenue
- -$423,954
Expenses
- Grants and similar amounts paid
- $2,298,001
- Compensation of officers, directors and key employees
- $747,738
- Other salaries and wages
- $2,434,202
- Salaries, compensation and benefits (total)
- $4,102,983
- Professional fundraising fees
- $0
- Legal fees
- $25,713
- Accounting fees
- $77,087
- Occupancy
- $384,855
- Depreciation
- $34,521
- Program services (functional)
- $7,394,848
- Management and general (functional)
- $785,532
- Fundraising (functional)
- $1,264,528
Balance sheet and other
- Total assets, start of year
- $17,255,243
- Total assets, end of year
- $17,930,550
- Total liabilities, end of year
- $3,514,460
- Net assets, end of year
- $14,416,090
- Land, buildings and equipment
- $130,240
- Publicly traded securities
- $6,744,523
- Net assets without donor restrictions
- $12,103,035
- Net assets with donor restrictions
- $2,313,055
- Gross receipts
- $14,074,843
- Employees
- 38
- Volunteers
- 500
- Year formed
- 1986
- State of legal domicile
- NY
From the e-filed returns the IRS publishes as XML (latest three processing years; amended returns replace the original). PDF copies at the IRS.
Officers, directors and key employees
As listed on the 990 for the year ended December 31, 2025, highest compensation first.
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| AMY GRAY | CHIEF EXECUTIVE OFFICER Officer | 35 | $333,963 | $1,018 |
| ARIK JOHNSON | CHIEF MISSION OFFICER Key employee | 35 | $237,342 | $27,290 |
| REBECCA CHAN | CONTROLLER Highest-paid employee | 35 | $156,410 | $48,107 |
| ROSEMARY COLUCCIO | CHIEF OPERATIONS OFF (THRU 6/13/25) Officer | 35 | $176,343 | $17,778 |
| MYNELLY PEREZ-ORELLANA | DIRECTOR, MARKETING & COMMUNICATIONS Highest-paid employee | 35 | $123,303 | $46,070 |
| DEBORAH BOYD | REGIONAL DEVELOPMENT DIRECTOR Highest-paid employee | 35 | $135,417 | $24,253 |
| JESSICA MARSOLEK | ASSISTANT DIRECTOR, MISSION PROGRAMS Highest-paid employee | 35 | $119,589 | $23,390 |
| MELINDA JENSEN | REGIONAL DEVELOPMENT OFF, NE REGION Highest-paid employee | 35 | $108,819 | $22,206 |
| JENNE COLER-DARK | CHAIR Trustee or director, Officer | 6 | $0 | $0 |
| ANGELA ALLEN | CHAIR ELECT Trustee or director, Officer | 6 | $0 | $0 |
| TERESA SRAJER | PAST CHAIR Trustee or director, Officer | 6 | $0 | $0 |
| JAY HUGHES | SECRETARY Trustee or director, Officer | 6 | $0 | $0 |
| CHRISTOPHER DECESARIS | TREASURER Trustee or director, Officer | 6 | $0 | $0 |
| JEFFREY BROWN | TRUSTEE Trustee or director | 6 | $0 | $0 |
| MARK COE | TRUSTEE Trustee or director | 6 | $0 | $0 |
7 more people on this return
| Name | Title | Hours / week | Compensation |
|---|---|---|---|
| ERIN FURR-STIMMING MD | TRUSTEE Trustee or director | 6 | $0 |
| BETH HOFFMAN | TRUSTEE Trustee or director | 6 | $0 |
| JONATHAN KLEIN ESQ | TRUSTEE Trustee or director | 6 | $0 |
| JAIME HATCHER-MARTIN MD | TRUSTEE Trustee or director | 6 | $0 |
| MARA SIFRY | TRUSTEE Trustee or director | 6 | $0 |
| AMBER SOUTHWELL PHD | TRUSTEE Trustee or director | 6 | $0 |
| DOMINIQUE THOMAS | TRUSTEE Trustee or director | 6 | $0 |
990 for the year ended December 31, 2024: 26 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| ROSEMARY COLUCCIO | CHIEF OPERATIONS OFFICER Officer | 35 | $286,482 | $31,727 |
| LOUISE VETTER | CHIEF EXECUTIVE OFF (THRU 7/12/2024) Officer | 35 | $281,981 | $34,155 |
| ARIK JOHNSON | CHIEF MISSION OFFICER Key employee | 35 | $218,271 | $14,571 |
| JAMISON SKALA | DIRECTOR, NATIONAL DEVELOPMENT Highest-paid employee | 35 | $190,938 | $13,229 |
| REBECCA CHAN | CONTROLLER Highest-paid employee | 35 | $120,050 | $44,507 |
| DEBORAH BOYD | REGIONAL DEVELOPMENT DIRECTOR Highest-paid employee | 35 | $120,084 | $22,631 |
| JESSICA MARSOLEK | ASSISTANT DIRECTOR, MISSION PROGRAMS Highest-paid employee | 35 | $111,772 | $19,744 |
| NICHOLE MENDOZA | REGIONAL DEVELOPMENT OFFICER PACIFIC WEST Highest-paid employee | 35 | $102,612 | $21,541 |
| VICTOR SUNG MD | PAST CHAIR Trustee or director, Officer | 6 | $0 | $0 |
| TERESA SRAJER | CHAIR Trustee or director, Officer | 6 | $0 | $0 |
| ANGELA ALLEN | TREASURER Trustee or director, Officer | 6 | $0 | $0 |
| JENNE COLER-DARK | CHAIR ELECT Trustee or director, Officer | 6 | $0 | $0 |
| JAY HUGHES | SECRETARY Trustee or director, Officer | 6 | $0 | $0 |
| KAMRAN ALAM | TRUSTEE Trustee or director | 6 | $0 | $0 |
| JEFFREY BROWN | TRUSTEE Trustee or director | 6 | $0 | $0 |
| JEFF CARROLL | TRUSTEE Trustee or director | 6 | $0 | $0 |
| MARK COE | TRUSTEE Trustee or director | 6 | $0 | $0 |
| ERIN FURR-STIMMING MD | TRUSTEE Trustee or director | 6 | $0 | $0 |
| BETH HOFFMAN | TRUSTEE Trustee or director | 6 | $0 | $0 |
| JONATHAN KLEIN ESQ | TRUSTEE Trustee or director | 6 | $0 | $0 |
| KELSEY PORTER | TRUSTEE (THRU 6/2024) Trustee or director | 6 | $0 | $0 |
| DOMINIQUE THOMAS | TRUSTEE Trustee or director | 6 | $0 | $0 |
| LESLIE M THOMPSON PHD | TRUSTEE Trustee or director | 6 | $0 | $0 |
| VICKI WHEELOCK MD | TRUSTEE Trustee or director | 6 | $0 | $0 |
| AMBER SOUTHWELL PHD | TRUSTEE Trustee or director | 6 | $0 | $0 |
| CHRISTOPHER DECESARIS | TRUSTEE Trustee or director | 6 | $0 | $0 |
990 for the year ended December 31, 2023: 23 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| LOUISE VETTER | CHIEF EXECUTIVE OFFICER Officer | 35 | $370,302 | $53,072 |
| ROSEMARY COLUCCIO | CHIEF OPERATIONS OFFICER Officer | 35 | $260,173 | $29,750 |
| DEBRA LOVECKY | DIR. OF EDUCATION PROG THRU MAY 2023 Highest-paid employee | 35 | $257,479 | $17,698 |
| ARIK JOHNSON | CHIEF MISSION OFFICER Key employee | 35 | $203,067 | $11,418 |
| JAMISON SKALA | DIRECTOR, NATIONAL DEVELOPMENT Highest-paid employee | 35 | $173,121 | $12,348 |
| REBECCA CHAN | CONTROLLER Highest-paid employee | 35 | $112,876 | $42,564 |
| DEBORAH BOYD | REGIONAL DEVELOPMENT DIRECTOR Highest-paid employee | 35 | $117,667 | $21,815 |
| VICTOR SUNG MD | PAST CHAIR Trustee or director, Officer | 6 | $0 | $0 |
| TERESA SRAJER | CHAIR Trustee or director, Officer | 6 | $0 | $0 |
| KAMRAN ALAM | TREASURER Trustee or director, Officer | 6 | $0 | $0 |
| JENNE COLER-DARK | CHAIR ELECT Trustee or director, Officer | 6 | $0 | $0 |
| JAY HUGHES | SECRETARY Trustee or director, Officer | 6 | $0 | $0 |
| ANGELA ALLEN | TRUSTEE Trustee or director | 6 | $0 | $0 |
| JEFFREY BROWN | TRUSTEE Trustee or director | 6 | $0 | $0 |
| JEFF CARROLL | TRUSTEE Trustee or director | 6 | $0 | $0 |
| MARK COE | TRUSTEE Trustee or director | 6 | $0 | $0 |
| ERIN FURR-STIMMING MD | TRUSTEE Trustee or director | 6 | $0 | $0 |
| BETH HOFFMAN | TRUSTEE Trustee or director | 6 | $0 | $0 |
| JONATHAN KLEIN ESQ | TRUSTEE Trustee or director | 6 | $0 | $0 |
| KELSEY PORTER | TRUSTEE Trustee or director | 6 | $0 | $0 |
| DOMINIQUE THOMAS | TRUSTEE Trustee or director | 6 | $0 | $0 |
| LESLIE M THOMPSON PHD | TRUSTEE Trustee or director | 6 | $0 | $0 |
| VICKI WHEELOCK MD | TRUSTEE Trustee or director | 6 | $0 | $0 |
990 for the year ended December 31, 2021: 24 people
| Name | Title | Hours / week | Compensation | Other / benefits |
|---|---|---|---|---|
| LOUISE VETTER | CHIEF EXECUTIVE OFFICER Officer | 35 | $335,472 | $44,442 |
| ROSEMARY COLUCCIO | CHIEF OPERATIONS OFFICER Officer | 35 | $238,551 | $26,987 |
| DEBRA LOVECKY | DIRECTOR OF EDUCATION PROGRAMS Highest-paid employee | 35 | $156,953 | $23,216 |
| CHRISTOPHER COSENTINO | DIRECTOR OF MARKETING & COMM. Highest-paid employee | 35 | $134,583 | $40,216 |
| JAMISON SKALA | DIRECTOR, NATIONAL DEVELOPMENT Highest-paid employee | 35 | $160,058 | $11,383 |
| GEORGE YOHRLING | CHIEF MISSION & SCI. AFFAIRS Highest-paid employee | 35 | $158,686 | $8,630 |
| DEBORAH BOYD | REGIONAL DEVELOPMENT DIRECTOR Highest-paid employee | 35 | $108,027 | $19,175 |
| VICTOR SUNG MD | CHAIR Trustee or director, Officer | 6 | $0 | $0 |
| TERESA SRAJER | CHAIR-ELECT Trustee or director, Officer | 6 | $0 | $0 |
| KAMRAN ALAM | TREASURER Trustee or director, Officer | 6 | $0 | $0 |
| JENNE COLER-DARK | SECRETARY Trustee or director, Officer | 6 | $0 | $0 |
| EJ GARNER | PAST CHAIR Trustee or director, Officer | 6 | $0 | $0 |
| ANGELA ALLEN | TRUSTEE Trustee or director | 6 | $0 | $0 |
| DANIEL BRENNAN | TRUSTEE Trustee or director | 6 | $0 | $0 |
| MARK COE | TRUSTEE Trustee or director | 6 | $0 | $0 |
| STACY COEN | TRUSTEE Trustee or director | 6 | $0 | $0 |
| WENDY ERLER | TRUSTEE Trustee or director | 6 | $0 | $0 |
| ERIN FURR-STIMMING MD | TRUSTEE Trustee or director | 6 | $0 | $0 |
| JAY HUGHES | TRUSTEE Trustee or director | 6 | $0 | $0 |
| JONATHAN KLEIN ESQ | TRUSTEE Trustee or director | 6 | $0 | $0 |
| KELSEY PORTER | TRUSTEE Trustee or director | 6 | $0 | $0 |
| DOMINIQUE THOMAS | TRUSTEE Trustee or director | 6 | $0 | $0 |
| LESLIE M THOMPSON PHD | TRUSTEE Trustee or director | 6 | $0 | $0 |
| VICKI WHEELOCK MD | TRUSTEE Trustee or director | 6 | $0 | $0 |
Address and contacts
- Address (IRS master file)
- 505 8TH AVE RM 1402, NEW YORK, NY 10018-4574
- In care of
- % ROSEMARY COLUCCIO
- Principal officer (990 for 2025)
- AMY GRAY, 505 EIGHTH AVENUE SUITE 1402, NEW YORK, NY 10018
- Signed the 990
- AMY GRAY, PRESIDENT AND CEO
- Phone
- (212) 242-1968
- Website
- WWW.HDSA.ORG
- Return prepared by
- EISNER ADVISORY GROUP LLC
Mission
TO IMPROVE THE LIVES OF EVERYONE IMPACTED BY HUNTINGTON'S DISEASE BY PROVIDING SUPPORT, DRIVING ADVOCACY, AND ACCELERATING RESEARCH.
Program accomplishments
- RESEARCH - SUPPORTS RESEARCH AS ADVISED BY ITS SCIENTIFIC ADVISORY BOARD. THE RESEARCH PROJECTS ARE INVOLVED IN FINDING CURES AND TREATMENTS FOR HUNTINGTON'S DISEASE.Expenses $1,178,929 · grants $406,772
- PATIENT AND FAMILY SERVICES - PROVIDES COUNSELING AND REFERRAL SERVICES TO PATIENTS WITH HUNTINGTON'S DISEASE AND THEIR FAMILIES.Expenses $3,175,526 · grants $1,862,900
- COMMUNITY OUTREACH - PROVIDES WORKSHOPS, SEMINARS, AND SYMPOSIUMS ON HUNTINGTON'S DISEASE THROUGH A NETWORK OF CHAPTER AFFILIATES AND BRANCHES THROUGHOUT THE UNITED STATES.Expenses $966,495
- EDUCATION PROVIDES INFORMATION AND EDUCATION THROUGH PUBLICATION ANDDISTRIBUTION OF NEWSLETTERS, BROCHURES AND SCIENCE UPDATESExpenses $2,073,898 · grants $28,329
What it must file and when
IRS records say it files Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N. Its accounting year ends in December, so each return is due on the 15th day of the 5th month after that.
| Tax year | Year ended | Due | IRS public records |
|---|---|---|---|
| 2025 | December 31, 2025 | May 15, 2026 | 990 on file |
| 2024 | December 31, 2024 | May 15, 2025 | 990 on file |
| 2023 | December 31, 2023 | May 15, 2024 | 990 on file |
IRS record
- EIN
- 13-3349872
- Tax-exempt status
- 501(c)(3): Charitable, religious, educational or scientific organization
- Foundation status
- Publicly supported organization (170(b)(1)(A)(vi))
- Donations deductible (Pub 78)
- Group exemption
- Exempt since
- 1988
- Accounting year ends
- December
- Files
- Form 990 or 990-EZ
- Group exemption
- 9201 (28 member organizations)
- Assets (IRS master file)
- $17,930,550
- Income (IRS master file)
- $14,074,843
Filing history
| Form | Year ended | Revenue | Expenses | Assets | Return |
|---|---|---|---|---|---|
| 990 | December 2025 | $11,232,523 | $9,444,908 | $17,930,550 | XML |
| 990 | December 2024 | $10,174,088 | $11,385,673 | $17,255,243 | XML |
| 990-T | December 2024 | – | – | – | IRS |
| 990 | December 2023 | $9,833,936 | $11,157,448 | $18,147,360 | XML |
| 990 | December 2022 | $10,709,965 | $9,418,102 | $17,419,711 | IRS |
| 990 | December 2021 | $12,200,152 | $7,945,111 | $15,786,342 | XML |
| 990 | December 2020 | – | – | – | IRS |
| 990 | December 2019 | – | – | – | IRS |
| 990 | December 2018 | – | – | – | IRS |
990-N: the IRS bulk file holds only the latest e-Postcard per organization; earlier years come from archived copies of that file since 2020 and can have gaps (the IRS e-Postcard search lists every one). 990, 990-EZ, 990-PF, 990-T: every e-filed return in the IRS e-file index since 2019; XML for the latest three processing years, amounts from the IRS Statistics of Income extracts before that. PDF copies and determination letters at the IRS (search EIN 13-3349872).
Questions about HUNTINGTONS DISEASE SOCIETY OF AMERICA INC
- What is the EIN of HUNTINGTONS DISEASE SOCIETY OF AMERICA INC?
- The employer identification number (EIN) of HUNTINGTONS DISEASE SOCIETY OF AMERICA INC is 13-3349872.
- Is HUNTINGTONS DISEASE SOCIETY OF AMERICA INC tax-exempt?
- Yes. The IRS lists it as tax-exempt under section 501(c)(3) since 1988.
- Are donations to HUNTINGTONS DISEASE SOCIETY OF AMERICA INC tax-deductible?
- Yes. It is listed in IRS Publication 78 (Group exemption).
- Which annual return does HUNTINGTONS DISEASE SOCIETY OF AMERICA INC file?
- Form 990 or 990-EZ. Based on its last return; a smaller organization may file the 990-N.
- When is the next return of HUNTINGTONS DISEASE SOCIETY OF AMERICA INC due?
- The return for tax year 2026 (the year ending December 31, 2026) is due May 17, 2027. Form 8868 extends it by six months; the 990-N cannot be extended.
- When did HUNTINGTONS DISEASE SOCIETY OF AMERICA INC last file with the IRS?
- The latest return in the IRS public files is the 990 for the year ended December 2025.
- Who is the principal officer of HUNTINGTONS DISEASE SOCIETY OF AMERICA INC?
- The 990 for the year ended December 31, 2025 names AMY GRAY.
- Who are the officers and directors of HUNTINGTONS DISEASE SOCIETY OF AMERICA INC?
- The 990 for the year ended December 31, 2025 lists 22 people; 8 received compensation from the organization, the highest $333,963 (AMY GRAY, CHIEF EXECUTIVE OFFICER).
- How much revenue does HUNTINGTONS DISEASE SOCIETY OF AMERICA INC have?
- On its 990 for the year ended December 31, 2025 it reported revenue of $11,232,523, expenses of $9,444,908 and total assets of $17,930,550 at year end.
Organizations in its group exemption (28)
- HUNTINGTONS DISEASE SOCITEY OF AMERICA GROUP RETURN EIN 90-0658125 · NEW YORK, NY · last filed 990 for 2025
- HUNTINGTONS DISEASE SOCIETY OF AMERICA INC EIN 23-7131085 · BENSALEM, PA
- HUNTINGTONS DISEASE SOCIETY OF AMERICA INC EIN 13-6271779 · NEWTON, MA
- HUNTINGTONS DISEASE SOCIETY OF AMERICA INC EIN 22-2942577 · CINCINNATI, OH · last filed 990-N for 2009
- HUNTINGTONS DISEASE OF AMERICA EIN 22-2942586 · SIOUX FALLS, SD · last filed 990-N for 2009
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