NBIA Disorders Association

Nonprofit profile at a glance

EIN
330712327
IRS 990 coverage
2010–2024
Forms available
Form 990 2024
Location
Cypress, TX, USA
Phone
8328356242
Rating
69
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Professional Societies, Associations

Reported finances

Revenue
$526,469
Expenses
$431,185
Assets
$1,061,655
Liabilities
$252,437

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

Leadership & pay

11 people listed

Executive titles in this filing

  • Amber Denton (President)
  • Meg Talley Dyer (Vice President)
  • Patricia V Wood (Former President)

Highest reported compensation

  • Amber Denton (President): $69,999 total reported compensation
  • Patricia V Wood (Former President): $30,357 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

In our drive to find a cure for NBIA we provide support to families educate the public and accelerate research with collaborators from around the world.

What it reported doing in 2024

Education & Support: This program encompasses many areas of work by the organization. The association publishes a free newsletter three times per year. The newsletter promotes awareness of NBIA educates the public and medical community about these rare disorders supports affected families and disseminates information on NBIA research and treatments. The association responds to general emails from NBIA families from the public and others in addition to all dissemination activities. The association maintains a web presence at www.nbiadisorders.org which provides a database of current accurate information on NBIA. The association also holds virtual webinars on topics of interest throughout the year and has Zoom support group meetings for NBIA families. The association has a networking program a Facebook group & Facebook cause page is on Twitter Instagram and LinkedIn has multiple videos posted on an NBIA YouTube channel and has a volunteer social media director. These all provide a forum for affected individuals their families caregivers and others affected by someone living with NBIA to receive support. Every other year we hold a Family Conference to bring together individuals and families affected by NBIA disorders for four days of learning support and connection. This years conference expenses totaled $120,211.

Operating model

Revenue model
Donor-supported. 97% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 67% for direct work, and 33% for grants.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and most voting board members are independent. Few specific pay-setting methods are documented in the filing; unanswered boxes are not proof of absence and the filing reports few safeguards for money sent abroad.

Rating breakdown

  • Financial Efficiency: 70
  • Transparency & Controls: 57
  • Accountability: 90
  • Sustainability: 60
  • Growth: 60

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 64.1%; rating input score 64
  • Program expense ratio: 76.8%; rating input score 77
  • Fundraising efficiency: $57.72 raised per $1 spent on fundraising; rating input score 80; 80th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 92.9%; rating input score 93; 19th percentile among comparable filings
  • Pay-setting controls: 0 of 6 controls in place; rating input score 0
    • Compensation committee: Missing
    • Independent consultant: Missing
    • Other Form 990s reviewed: Missing
    • Written employment contract: Missing
    • Compensation survey or study: Missing
    • Board or committee approval: Missing
  • 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; 76th 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: 6 of 8 controls in place; rating input score 75
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • CEO compensation review process: Pass
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 18.1%; rating input score 74; 74th percentile among comparable filings
  • Total-asset coverage ratio: 2.46; rating input score 70; 70th percentile among comparable filings
  • Liabilities to assets ratio: 0.24; rating input score 29; 29th percentile among comparable filings
  • Officer compensation ratio: 23.3%; rating input score 11; 11th percentile among comparable filings

Growth

  • Program expense growth: -0.9% per year; rating input score 0; 15th percentile among comparable filings
  • Revenue growth: 2.4% per year; rating input score 100; 27th percentile among comparable filings
  • Asset growth: 7.2% per year; rating input score 100; 48th percentile among comparable filings

Details

  • Where the money goes: 64.1% of revenue deployed · 76.8% of spending went to programs
  • Governance: 9 of 9 board members independent · 6 of 8 filing controls reported
  • Programs: 3 filed program accomplishments · $331K in reported program spending
  • Leadership: top reported pay $70K · 11 people listed · 0 of 6 pay-setting controls reported
  • Consistency: 45 of 46 current checks pass · 1 finding to review
  • Schedules: 6 filed schedules · includes major donors, foreign activity, and executive pay
  • Filing history: 15 filing years from 2010 to 2024
  • Contacts: How to reach this organization
  • Money network: 2 filed money-flow records
  • 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: Pay-setting controls scored 0/100.
  • High — Transparency & Controls: Foreign activity oversight: 8 of 8 not reported.
  • Review — Accountability: Governance controls: 2 of 8 not reported.
  • High — Growth: Program expense growth scored 0/100.
  • High — Sustainability: Officer compensation ratio scored 11/100.
  • High — Sustainability: Liabilities to assets ratio scored 29/100.
  • Review — Transparency & Controls: Foreign grant itemization did not reconcile in the filed values.