Neuroacanthocytosis Advocacy USA Incorporated

Nonprofit profile at a glance

EIN
843711526
IRS 990-EZ coverage
2021–2025
Forms available
Form 990-EZ 2025, Form 990-N 2020
Location
Melbourne, FL, USA
Rating
64
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Nerve, Muscle and Bone Diseases

Reported finances

Revenue
$64,649
Expenses
$56,566
Assets
$96,171
Liabilities
$2,500

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

Leadership & pay

9 people listed

Executive titles in this filing

  • Joyce Willard-Williford (President)
  • Susan Wagner (Vice President)

People named in this filing

  • Joyce Willard-Williford (President)
  • Susan Wagner (Vice President)
  • Julie Kerner (Secretary)

Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.

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

Overview

Mission

The primary purpose of this corporation is to operate exclusively for charitable purposes and in furtherance of such goals is authorized to do any or all activities which it is empowered to do under the Articles of Incorporation and Florida law. No activities will be allowed which would jeopardize the corporations tax-exempt status or otherwise be inconsistent with its classification as an organization described in sections 501 c3 of the Internal Revenue Code.The specific purposes of the corporation is to support patients with neuroacanthocytosis-related diseases and their caregivers to promote awareness of neuroacanthocytosis-related diseases and to support research aimed at alleviation of said diseases.

What it reported doing in 2025

In 2025 we continued to distribute grant payments to the Icahn School of Medicine for a brain tissue research project called "Neuropathology of Neuroacanthocytosis." Both of the diseases this organization represents - VPS13A formerly called chorea-acanthocytosis and XK disease formerly called McLeod syndrome are ultra rare diseases with only a handful of patients in the USA. The brain study represents the first look at human brain tissue of patients who had the disease. These diseases are ultra-rare. XK disease has a 1:10,000,000 prevalence and VPS13A has a 1:1,000,000 prevalence worldwide. Research results have been published in the Parkinson and Movement Disorders Societys Movement Disorder journal.

Operating model

Revenue model
Donor-supported. 100% of the money available for current operations came from contributions and gifts.
Distribution model
Transfer-based 990-EZ. The 990-EZ reports grants or member benefits, but it does not separate enough spending to show the nonprofit’s full delivery mix.

The verdict

SUPPORTED - The filed numbers largely add up. Some filed totals do not add up and program spending has declined or grown slowly.

Rating breakdown

  • Financial Efficiency: 54
  • Transparency & Controls: 82
  • Sustainability: 57
  • Growth: 20

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 86.8%; rating input score 87
  • Program expense ratio: Limited

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 51st percentile among comparable filings
  • Major donor itemization: Limited

Sustainability

  • Operating margin: 12.5%; rating input score 64; 64th percentile among comparable filings
  • Total-asset coverage ratio: 1.7; rating input score 61; 61st percentile among comparable filings
  • Liabilities to assets ratio: 0.03; rating input score 21; 21st percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 56; 56th percentile among comparable filings

Growth

  • Program expense growth: -12.2% per year; rating input score 0; 26th percentile among comparable filings
  • Revenue growth: -9.3% per year; rating input score 0; 26th percentile among comparable filings
  • Asset growth: 27.2% per year; rating input score 100; 89th percentile among comparable filings

Details

  • Where the money goes: 86.8% of revenue deployed
  • Governance: Filed governance answers
  • Accomplishments: 3 filed program accomplishments
  • Leadership: top reported pay $0 · 9 people listed
  • Consistency: 6 of 7 current checks pass · 1 finding to review
  • Schedules: 2 filed schedules
  • Filing history: 5 filing years from 2021 to 2025
  • Contacts: How to reach this organization
  • 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 — Transparency & Controls: Part I part ii net assets crosscheck did not reconcile in the filed values.
  • High — Growth: Program expense growth scored 0/100.
  • High — Growth: Revenue growth scored 0/100.
  • High — Sustainability: Liabilities to assets ratio scored 21/100.
  • Review — Sustainability: Officer compensation ratio scored 56/100.