Mission
TO IMPROVE THE LIVES OF EVERYONE IMPACTED BY HUNTINGTON'S DISEASE BY PROVIDING SUPPORT, DRIVING ADVOCACY, AND ACCELERATING RESEARCH.
Public Charity
HUNTINGTON'S DISEASE SOCIETY OF AMERICA INC
HUNTINGTON'S DISEASE SOCIETY OF AMERICA INC is a nonprofit organization categorized as Public Charity based in NEW YORK, NY. Its most recent IRS filing (2025) reports revenue of $11.2M, expenses of $9.4M, total assets of $17.9M. Imperigo tracks 158 reported grant relationships connected to this organization totaling approximately $8.8M.
EIN: 133349872
NEW YORK, NY
Latest filing: 2025
Total Revenue$11.2M
Total Expenses$9.4M
Total Assets$17.9M
Grant Records158
Funding Total$8.8M
Filing Years2021–2025
Where $100 goes at Huntington's Disease Society of America Inc
How Huntington's Disease Society of America Inc divides every $100 it spends, from its own Form 990 filings, averaged across 9 years.
$77
Programs
the work itself
$8
Management
running the organization
$15
Fundraising
raising the next dollar
Inside the $77 for programs
$33
Patient and family services
$22
Education provides information and education through publication anddistribution of newsletters, brochures and science updates
$12
Research
Plus 1 more program. Cost per person served and the full program breakdown are on the full profile.
Source: Form 990 filings with the IRS, latest fiscal year 2025. Shares are from the organization's reported expenses. Data by Imperigo; not affiliated with the IRS.
Sample Grants Received
CLN2 BATTEN DISEASE RESEARCH
$500,000
GENERAL SUPPORT
$14,665
TO SUPPORT RESEARCH FOR HUNTINGTON'S DISEASE
$7,500
RACE BENEFICIARY
$6,795
For grant recipient's exempt purposes
$383,839
Showing up to 5 of 158 total records — full history available with membership.
Officers & Directors
TRUSTEE
Amber Southwell Phd
CHIEF EXECUTIVE OFFICER
Amy Gray
CHAIR ELECT
Angela Allen
CHIEF MISSION OFFICER
Arik Johnson
TRUSTEE
Beth Hoffman
TREASURER
Christopher Decesaris
Officer compensation and complete director data available with membership.
Top Grant Purposes
Financial Trends
| Year | Revenue | Expenses | Assets |
|---|---|---|---|
| 2025 | $11.2M | $9.4M | $17.9M |
| 2024 | $10.2M | $11.4M | $17.3M |
| 2023 | $9.8M | $11.2M | $18.1M |
| 2022 | $10.7M | $9.4M | $17.4M |
| 2021 | $12.2M | $7.9M | $15.8M |
Between 2021 and 2025, reported annual revenue declined from $12.2M to $11.2M (-8%), with total assets most recently reported at $17.9M.
Interactive year-over-year charts and full filing details available with membership.