Huntington's Disease Society of America

Legal name: Huntington's Disease Society of America Group

Nonprofit profile at a glance

EIN
900658125
IRS 990 coverage
2019–2025
Official website data refreshed
Sep 2026
Forms available
Form 990 2025
Location
New York, NY, US
Phone
800-345-HDSA (4372)
Rating
85
Verdict
STRONG
Rating confidence
Moderate

Official website

Reported finances

Revenue
$3,749,799
Expenses
$3,500,605
Assets
$866,995
Liabilities
$29,325

Source: IRS Form 990. Selected filing: tax year 2025. Amounts in USD.

Leadership & pay

22 people listed

Executive titles in this filing

  • AMY GRAY (CHIEF EXECUTIVE OFFICER)

Highest reported compensation

  • AMY GRAY (CHIEF EXECUTIVE OFFICER): $334,981 total reported compensation
  • ARIK JOHNSON (CHIEF MISSION OFFICER): $264,632 total reported compensation
  • REBECCA CHAN (CONTROLLER): $204,517 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2025. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

The Huntington's Disease Society of America (HDSA) is dedicated to improving the lives of everyone affected by Huntington's disease (HD) and finding a cure.

What it reported doing in 2025

Community outreach - provides workshops, seminars, and symposiums on huntington's disease through a network of chapter affiliates and branches throughout the united states.

Operating model

Revenue model
Donor-supported. 99% of the money available for current operations came from contributions and gifts.
Distribution model
Affiliate network. The nonprofit sent 77% of its reported program spending through affiliated organizations.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

STRONG - A large share of available resources goes toward mission work and the filed numbers largely add up. Fundraising costs are high for each dollar raised and total assets are small relative to annual expenses; liquid coverage is unknown.

Rating breakdown

  • Financial Efficiency: 84
  • Transparency & Controls: 86
  • Accountability: 100
  • Sustainability: 32
  • Growth: 80

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 86.5%; rating input score 86
  • Program expense ratio: 92.6%; rating input score 93
  • Fundraising efficiency: $14.47 raised per $1 spent on fundraising; rating input score 49; 49th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: 4 of 6 controls in place; rating input score 67
    • Compensation committee: Missing
    • Independent consultant: Missing
    • Other Form 990s reviewed: Pass
    • Written employment contract: Pass
    • Compensation survey or study: Pass
    • Board or committee approval: Pass
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 100%; rating input score 100; 75th percentile among comparable filings
  • Major donor itemization: Limited
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
  • Governance controls: 9 of 9 controls in place; rating input score 100
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: Pass
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 6.6%; rating input score 47; 47th percentile among comparable filings
  • Total-asset coverage ratio: 0.25; rating input score 7; 7th percentile among comparable filings
  • Liabilities to assets ratio: 0.03; rating input score 66; 66th percentile among comparable filings
  • Officer compensation ratio: 45.7%; rating input score 2; 2nd percentile among comparable filings

Growth

  • Program expense growth: 3.6% per year; rating input score 100; 27th percentile among comparable filings
  • Revenue growth: 4.5% per year; rating input score 100; 34th percentile among comparable filings
  • Asset growth: -2.5% per year; rating input score 0; 5th percentile among comparable filings

Details

  • What they do: 5 programs and campaigns described on the official site · 1 operating location identified
  • Where the money goes: 86.5% of revenue deployed · 92.6% of spending went to programs
  • Governance: 14 of 14 board members independent · 9 of 9 filing controls reported
  • Programs: 3 filed program accomplishments · $3.2M in reported program spending
  • Leadership: top reported pay $335K · 22 people listed · 4 of 6 pay-setting controls reported
  • Consistency: 28 of 28 current checks pass
  • Schedules: 8 filed schedules · includes grants and executive pay
  • Filing history: 7 filing years from 2019 to 2025
  • Contacts: How to reach this organization
  • Money network: 8 filed money-flow records
  • Related organizations: 1 filed related-organization link
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • Moderate — Financial Efficiency: Fundraising efficiency scored 49/100.
  • High — Sustainability: Total-asset coverage ratio scored 7/100.
  • Moderate — Sustainability: Operating margin scored 47/100.
  • High — Growth: Asset growth scored 0/100.
  • High — Sustainability: Officer compensation ratio scored 2/100.