Hydrocephalus Association

Nonprofit profile at a glance

EIN
943000301
IRS 990 coverage
2012–2025
Forms available
Form 990 2025
Location
North Bethesda, MD, USA
Phone
3012023811
Rating
80
Verdict
STRONG
Rating confidence
Moderate
Sector
Brain Disorders

Official website

Reported finances

Revenue
$4,383,244
Expenses
$3,784,832
Assets
$4,447,001
Liabilities
$918,837

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

Leadership & pay

17 people listed

Executive titles in this filing

  • DIANA GRAY (PRESIDENT AND CEO)

Highest reported compensation

  • DIANA GRAY (PRESIDENT AND CEO): $286,107 total reported compensation
  • AMANDA GARZON (CHIEF OPERATING OFFICER): $160,301 total reported compensation
  • LINDA RILEY (NATIONAL DIRECTOR OF DEVELOPMENT): $159,859 total reported compensation

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

Overview

Mission

Find a cure for hyrocephalus and improve the lives of those impacted. We will accomplish this by collaborating with patients, caregivers, researchers and industry, raising awareness, and funding innovative, high-impact research to prevent, treat and cure hydrocephalus.

What it reported doing in 2025

Researchthe hydrocephalus association (ha) is dedicated to advancing high-quality research. Each year the ha funds talented researchers through direct grant funding enabling them to leverage these projects and secure larger federal grants for greater impact. The ha funds research that is aligned with patient-identified priorities to improve understanding of the condition, identify and test new treatments, move discoveries towards clinical use, enhance diagnosis, improve access to care, and ultimately elevate the quality of life of those living with hydrocephalus. Grant programs include the innovator award, accelerator award, neuropsychology and cognition award, engineering prize, residents prize, and the next generation award. Ha's impact is amplified through the many research networks that we support: the ha patient-powered interactive engagement registry (happier), ha network for discovery science (hands), hydrocephalus clinical research network (hcrn), and adult hcrn (ahcrn). Happier provides patients and caregivers the opportunity to engage in research while providing researchers with access to critical data. Hands provides the connections, technology, and tools needed to spur and support innovative research, while the pediatric-focused hcrn and adult- focused ahcrn provide the structure and expertise necessary to efficiently and thoroughly test these new technologies and clinical therapies with the highest clinical standards. By funding basic, translational, and clinical researchers, ha has created a pipeline to move research from the bench to the bedside.

Operating model

Revenue model
Donor-supported. 98% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 78% for direct work, and 22% for grants.
  • 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. The filing reports few safeguards for money sent abroad and some filing-based governance responses are negative or unanswered.

Rating breakdown

  • Financial Efficiency: 79
  • Transparency & Controls: 73
  • Accountability: 95
  • Sustainability: 47
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 75%; rating input score 75
  • Program expense ratio: 83.9%; rating input score 84
  • Fundraising efficiency: $51.01 raised per $1 spent on fundraising; rating input score 80; 80th 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: 0 of 8 controls in place; rating input score 0
    • Claims monitoring procedures: Fail
    • Requires narrative reports: Fail
    • Conducts field audits: Fail
    • May suspend future funding: Fail
    • Requires financial reports: Fail
    • Conducts site visits: Fail
    • Requires grant agreements: Fail
    • May require repayment: Fail
  • Grant itemization coverage: 100%; rating input score 100; 75th percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
  • Governance controls: 8 of 9 controls in place; rating input score 89
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: Fail
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 13.7%; rating input score 63; 63rd percentile among comparable filings
  • Total-asset coverage ratio: 1.17; rating input score 39; 39th percentile among comparable filings
  • Liabilities to assets ratio: 0.21; rating input score 34; 34th percentile among comparable filings
  • Officer compensation ratio: 24%; rating input score 12; 12th percentile among comparable filings

Growth

  • Program expense growth: 4.1% per year; rating input score 100; 30th percentile among comparable filings
  • Revenue growth: 1.9% per year; rating input score 100; 16th percentile among comparable filings
  • Asset growth: 4% per year; rating input score 100; 27th percentile among comparable filings

Details

  • Where the money goes: 75% of revenue deployed · 83.9% of spending went to programs
  • Governance: 12 of 12 board members independent · 8 of 9 filing controls reported
  • Programs: 5 filed program accomplishments · $3.2M in reported program spending
  • Leadership: top reported pay $286K · 17 people listed · 4 of 6 pay-setting controls reported
  • Consistency: 41 of 41 current checks pass
  • Schedules: 10 filed schedules · includes major donors, foreign activity, grants, and executive pay
  • Filing history: 14 filing years from 2012 to 2025
  • Contacts: How to reach this organization
  • Money network: 14 filed money-flow records
  • Related organizations: 9 filed related-organization links
  • 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.
  • Staff and benefit plans: Retirement and health plans the organization files with the Department of Labor, and the people in them.

Key Signals

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

  • High — Transparency & Controls: Foreign activity oversight: 8 of 8 not reported.
  • Review — Accountability: Governance controls: Other executive compensation review process not reported.
  • Moderate — Sustainability: Total-asset coverage ratio scored 39/100.
  • High — Sustainability: Officer compensation ratio scored 12/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 34/100.