Texas Neurofibromatosis Foundation

Nonprofit profile at a glance

EIN
742138345
IRS 990 coverage
2020–2025
Forms available
Form 990 2025, Form 990-T 2020
Location
Flower Mound, TX, USA
Phone
9727396086
Rating
59
Verdict
MIXED
Rating confidence
Standard
Sector
Nerve, Muscle and Bone Diseases

Official website

Reported finances

Revenue
$802,784
Expenses
$676,450
Assets
$625,545
Liabilities
$18,711

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

Leadership & pay

15 people listed

Executive titles in this filing

  • Laura G Lyon (Director/President)
  • Cindy Hahn (Executive Director)

Highest reported compensation

  • Cindy Hahn (Executive Director): $107,000 total reported compensation

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

Overview

Mission

To fund neurofibromatosis research and education and to provide for support groups for those facing the illness.

What it reported doing in 2025

The organization provides neurofibromatosis educational materials/information to patients, physicians, teachers and counselors; physician and clinical referrals; and statewide neurofibromatosis clinics. It conducts a symposium featuring nationally recognized researchers, a yearly family camp, and family support groups. In 2016 the the family camp served 136 patients and family members, 6 support groups serving 95 individuals, total served though events and clinics were 768 patients.

Operating model

Revenue model
Donor-supported. 97% 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.
  • Includes noncash contributions: Reported contributions include donated property or goods.

The verdict

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

Rating breakdown

  • Financial Efficiency: 26
  • Transparency & Controls: 73
  • Accountability: 100
  • Sustainability: 52
  • Growth: 80

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 27.7%; rating input score 28
  • Program expense ratio: 30%; rating input score 30
  • Fundraising efficiency: $2.07 raised per $1 spent on fundraising; rating input score 6; 6th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 0%; rating input score 0; 15th 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; 64th percentile among comparable filings
  • Governance controls: 8 of 8 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: 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: 15.7%; rating input score 66; 66th percentile among comparable filings
  • Total-asset coverage ratio: 0.92; rating input score 41; 41st percentile among comparable filings
  • Liabilities to assets ratio: 0.03; rating input score 49; 49th percentile among comparable filings
  • Officer compensation ratio: 15.8%; rating input score 23; 23rd percentile among comparable filings

Growth

  • Program expense growth: 5.7% per year; rating input score 100; 40th percentile among comparable filings
  • Revenue growth: 16.9% per year; rating input score 100; 78th percentile among comparable filings
  • Asset growth: -1.3% per year; rating input score 0; 12th percentile among comparable filings

Details

  • Where the money goes: 27.7% of revenue deployed · 30% of spending went to programs
  • Governance: 15 of 15 board members independent · 8 of 8 filing controls reported
  • Programs: 3 filed program accomplishments · $203K in reported program spending
  • Leadership: top reported pay $107K · 15 people listed
  • Consistency: 28 of 28 current checks pass
  • Schedules: 8 filed schedules · includes major donors and grants
  • Filing history: 5 filing years from 2020 to 2025
  • Contacts: How to reach this organization
  • Money network: 1 filed money-flow record
  • Related organizations: Filed and resolved organization relationships.
  • 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.

  • High — Financial Efficiency: Mission deployment rate scored 28/100.
  • Moderate — Financial Efficiency: Program expense ratio scored 30/100.
  • High — Transparency & Controls: Grant itemization coverage scored 0/100.
  • High — Financial Efficiency: Fundraising efficiency scored 6/100.
  • High — Growth: Asset growth scored 0/100.
  • Moderate — Sustainability: Total-asset coverage ratio scored 41/100.
  • High — Sustainability: Officer compensation ratio scored 23/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 49/100.