Huntington's Disease Society
The Huntington's Disease Society of America (HDSA) is a premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington's disease. Based in New York, NY, HDSA operates as a 501(c)(3) organization and serves as the world's leader in providing support, education, advocacy, and research funding for people with Huntington's disease and their families.
Financial Overview
From 2024 IRS Form 990-PF · View filing
Total Assets
$17.3M
-4.9% YoY
Annual Giving
$3.0M
+1.7% YoY
Grant Count
67
+0.0% YoY
Avg Grant Size
$45K
+1.7% YoY
Mission & Focus Areas
Mission: To improve the lives of everyone affected by Huntington's disease and their families, providing help for today and hope for tomorrow.
HDSA operates across four primary program areas:
- Research – Supports research projects advised by its scientific advisory board, focused on finding cures and treatments for Huntington's disease
- Community Outreach – Provides workshops, seminars, and symposiums on Huntington's disease through a network of chapter affiliates and branches throughout the United States
- Patient and Family Services – Offers counseling and referral services to patients with Huntington's disease and their families
- Education – Distributes information through newsletters, brochures, and science updates
Grantmaking
HDSA actively funds research and community services initiatives. Recent grantmaking activity includes:
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Geographic Focus
Where this funder awards grants
HDSA funds research and community programs nationally and internationally. The organization operates through a network of chapter affiliates and branches throughout the United States. Recent research awards have supported investigators in Ireland and the United States.
Grant Distribution by State
States
Cities
Financial History
Multi-year comparison from IRS filings
2023 Financial Data:
- Total revenues: $9,833,936
- Total expenses: $11,157,448
- Total assets: $18,147,360
- Number of employees: 37
Organization Structure: HDSA is a parent organization to a group of 31 other organizations.
| Metric | 2024 | 2023 | 2022 |
|---|---|---|---|
| Total Assets | $17,255,243 | $18,147,360 | $17,419,711 |
| Revenue | $10,174,088 | $9,833,936 | $10,709,965 |
| Expenses | $11,385,673 | $11,157,448 | $9,418,102 |
| Qualifying Distributions | — | — | — |
| Net Investment Income | $204,685 | $148,302 | $29,528 |
| Distributable Amount | — | — | — |
Giving Over Time
Total grant dollars and number of grants per year
Grant Insights
How this funder distributes its grants
Top Recipients
Top 10 recipients in 2024
Grant Size Distribution
250 grants across all recorded years
Giving History
Grant recipients and amounts by year
No grants recorded for .
Leadership & Key People
Leadership team and compensation from IRS filings
- Louise Vetter – President & CEO
- Jamison Skala – Director of Development
- Dr. Tamara Maiuri – Associate Director of Research & Patient Engagement
Compensation Overview
From 2024 IRS filing
From 2024 filing
| Name | Title | Hours | Compensation |
|---|---|---|---|
| VICTOR SUNG MD | PAST CHAIR | 6 | — |
| TERESA SRAJER | CHAIR | 6 | — |
| ANGELA ALLEN | TREASURER | 6 | — |
| JENNE COLER-DARK | CHAIR ELECT | 6 | — |
| JAY HUGHES | SECRETARY | 6 | — |
| KAMRAN ALAM | TRUSTEE | 6 | — |
| JEFFREY BROWN | TRUSTEE | 6 | — |
| JEFF CARROLL | TRUSTEE | 6 | — |
| MARK COE | TRUSTEE | 6 | — |
| ERIN FURR-STIMMING MD | TRUSTEE | 6 | — |
| BETH HOFFMAN | TRUSTEE | 6 | — |
| JONATHAN KLEIN ESQ | TRUSTEE | 6 | — |
| KELSEY PORTER | TRUSTEE (THRU 6/2024) | 6 | — |
| DOMINIQUE THOMAS | TRUSTEE | 6 | — |
| LESLIE M THOMPSON PHD | TRUSTEE | 6 | — |
| VICKI WHEELOCK MD | TRUSTEE | 6 | — |
| AMBER SOUTHWELL PHD | TRUSTEE | 6 | — |
| CHRISTOPHER DECESARIS | TRUSTEE | 6 | — |
| LOUISE VETTER | CHIEF EXECUTIVE OFF (THRU 7/12/2024) | 35 | $281,981 |
| ROSEMARY COLUCCIO | CHIEF OPERATIONS OFFICER | 35 | $286,482 |
| ARIK JOHNSON | CHIEF MISSION OFFICER | 35 | $218,271 |
| JAMISON SKALA | DIRECTOR, NATIONAL DEVELOPMENT | 35 | $190,938 |
| DEBORAH BOYD | REGIONAL DEVELOPMENT DIRECTOR | 35 | $120,084 |
| REBECCA CHAN | CONTROLLER | 35 | $120,050 |
| JESSICA MARSOLEK | ASSISTANT DIRECTOR, MISSION PROGRAMS | 35 | $111,772 |
| NICHOLE MENDOZA | REGIONAL DEVELOPMENT OFFICER PACIFIC WEST | 35 | $102,612 |
Recent News & Activity
Recent developments and announcements
**Charity Ratings & Recognition:**
Earned a Four-Star Rating from Charity Navigator (September 2023), designating HDSA as an official "Give with Confidence" charity based on mission impact, strong financial health, and accountability and transparency
Received Top-Rated status from CharityWatch (June 2015)
**Current Initiatives:**
Official charity partner of New York Road Runners for the TCS New York City Marathon, offering runners the opportunity to fundraise for HDSA Mission Programs
Active advocacy efforts urging the FDA to allow AMT-130 to move forward to science-driven review
2026 Annual HDSA Convention planned, bringing together patients, families, caregivers, researchers, and advocates
2026 Donald A. King Summer Research Fellowship now accepting applications
**Community Programs:**
Free support groups for individuals, loved ones, and families impacted by Huntington's disease
Greater NY Chapter hosts education series and events, including Team Hope Walks
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Data last updated April 2026. Sourced from IRS Form 990-PF filings. Research dossier generated April 2026.
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