National Spasmodic Torticollis

Nonprofit profile at a glance

EIN
330879421
IRS 990 coverage
2013–2024
Forms available
Form 990 2024, Form 990-T 2024
Location
Fountain Valley, CA, USA
Phone
6575540661
Rating
65
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Nerve, Muscle and Bone Diseases

Official website

Reported finances

Revenue
$54,564
Expenses
$231,431
Assets
$94,045
Liabilities
$0

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

5 people listed

Executive titles in this filing

  • Kenneth Price (President)

People named in this filing

  • Kenneth Price (President)
  • Karen Frei MD (Chariman)
  • Sandra Levine (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. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

The mission of the NSTA is to support the needs and well being of affected individuals and families; to promote awareness and education; to advance research for more treatments and ultimately a cure.

What it reported doing in 2024

People who receive the ST Quarterly magazine use it as a continuous source of up-to-date information regarding spasmodic torticollis. From the information they learn through the articles written by medical professionals and people inflicted with ST, they are able to communicate clearly with the medical professionals involved with their healthcare. In addition to information, readers are using the magazine as a source of emotional support. They take comfort knowing there are people who understand what they are going through and there is a place to contact if they should ever need information or support.

Operating model

Revenue model
Donor-supported. 91% of the money available for current operations came from contributions and gifts.
Distribution model
Direct operator. The filing allocates 100% of reported program-service expenses outside its grant, affiliate-payment, and member-benefit lines. This expense classification does not rule out separately announced grant awards.

The verdict

SUPPORTED - The filed numbers largely add up and a large share of available resources goes toward mission work. A relatively small share of total spending goes to programs and a relatively small share of voting board members are independent.

Rating breakdown

  • Financial Efficiency: 66
  • Transparency & Controls: 92
  • Accountability: 32
  • Sustainability: 24
  • Growth: 60

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 100%; rating input score 100
  • Program expense ratio: 30.4%; rating input score 30
  • Fundraising efficiency: Limited

Transparency & Controls

  • Consistency checks: 90%; rating input score 90; 13th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: Limited
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 25%; rating input score 25; 18th percentile among comparable filings
  • Governance controls: 3 of 7 controls in place; rating input score 43
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • CEO compensation review process: NotApplicable
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Missing
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: -324.1%; rating input score 10; 10th percentile among comparable filings
  • Total-asset coverage ratio: 0.41; rating input score 15; 15th percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 69; 69th percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 60; 60th percentile among comparable filings

Growth

  • Program expense growth: -0.2% per year; rating input score 0; 50th percentile among comparable filings
  • Revenue growth: 3.4% per year; rating input score 100; 73rd percentile among comparable filings
  • Asset growth: 79.9% per year; rating input score 100; 99th percentile among comparable filings

Details

  • Where the money goes: 100% of revenue deployed · 30.4% of spending went to programs
  • Governance: 2 of 8 board members independent · 3 of 7 filing controls reported
  • Programs: 4 filed program accomplishments · $70K in reported program spending
  • Leadership: top reported pay $0 · 5 people listed
  • Consistency: 16 of 17 current checks pass · 1 finding to review
  • Schedules: 4 filed schedules · includes major donors
  • Filing history: 10 filing years from 2013 to 2024
  • Contacts: How to reach this organization
  • Money network: Resolved incoming and outgoing counterparties from filed money flows.
  • 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: Program expense ratio scored 30/100.
  • High — Accountability: Independent voting board scored 25/100.
  • Moderate — Accountability: Governance controls: 3 of 6 not reported.
  • High — Sustainability: Operating margin scored 10/100.
  • High — Growth: Program expense growth scored 0/100.
  • Moderate — Transparency & Controls: Schedule A contributions reconciliation did not reconcile in the filed values.
  • High — Sustainability: Total-asset coverage ratio scored 15/100.