Charcot-marie-tooth Association

Nonprofit profile at a glance

EIN
222480896
IRS 990 coverage
2015–2025
Forms available
Form 990 2025
Location
Glenolden, PA, USA
Phone
8006062682
Rating
83
Verdict
STRONG
Rating confidence
Moderate

Official website

Reported finances

Revenue
$6,864,031
Expenses
$7,355,825
Assets
$8,112,362
Liabilities
$2,054,372

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

Leadership & pay

21 people listed

Executive titles in this filing

  • SUZANNE BRUHN (CHIEF EXECUTIVE OFFICER)

Highest reported compensation

  • SUZANNE BRUHN (CHIEF EXECUTIVE OFFICER): $310,996 total reported compensation
  • JEANA SWEENEY (CHIEF ENGAGEMENT AND GIFT OFFICER): $150,179 total reported compensation
  • KATHERINE FORSEY (CHIEF RESEARCH OFFICER): $142,012 total reported compensation

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

Overview

Mission

Cmta awards research fellowships and grants for research on charcot-marie-tooth diesease. Cmta also hosts bi-annual meetings of all researchers receiving its funding to promote knowledge exchange and synergy. It uses the services of a medical research consultant to oversee the selection of the receipients of the research funding and tp write the grants and contracts with these researchers.

What it reported doing in 2025

Cmta organizes and conducts support groups, conferences, a camp for children ages 10-18 with cmt at 2 u.s. Locations, and educational webinars for patients, their families and medical practitioners to share knowledge and promote awareness of charcot-marie-tooth disease.cmta also publishes a bi-monthly newsletter and other educational publications which are available to the public.cmta also maintains a website for patients, their families and medical practitioners to assist in understanding and treating charcot-marie-tooth disease.

Operating model

Revenue model
Donor-supported. 83% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 50% for direct work, and 50% 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 fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 90
  • Transparency & Controls: 68
  • Accountability: 100
  • Sustainability: 24
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 97.3%; rating input score 97
  • Program expense ratio: 90.7%; rating input score 91
  • Fundraising efficiency: $16.73 raised per $1 spent on fundraising; rating input score 53; 53rd percentile among comparable filings

Transparency & Controls

  • Consistency checks: 93.8%; rating input score 94; 21st percentile among comparable filings
  • Pay-setting controls: 3 of 6 controls in place; rating input score 50
    • Compensation committee: Pass
    • Independent consultant: Missing
    • Other Form 990s reviewed: Missing
    • Written employment contract: Pass
    • Compensation survey or study: Missing
    • 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: 99.5%; rating input score 99; 44th 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: 9 of 9 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: Pass
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: -7.2%; rating input score 12; 12th percentile among comparable filings
  • Total-asset coverage ratio: 1.1; rating input score 37; 37th percentile among comparable filings
  • Liabilities to assets ratio: 0.25; rating input score 30; 30th percentile among comparable filings
  • Officer compensation ratio: 9.7%; rating input score 34; 34th percentile among comparable filings

Growth

  • Program expense growth: 9.5% per year; rating input score 100; 58th percentile among comparable filings
  • Revenue growth: 7.7% per year; rating input score 100; 56th percentile among comparable filings
  • Asset growth: 16.9% per year; rating input score 100; 78th percentile among comparable filings

Details

  • Where the money goes: 97.3% of revenue deployed · 90.7% of spending went to programs
  • Governance: 17 of 17 board members independent · 9 of 9 filing controls reported
  • Programs: 2 filed program accomplishments · $6.7M in reported program spending
  • Leadership: top reported pay $311K · 21 people listed · 3 of 6 pay-setting controls reported
  • Highest-paid contractors: 1 contractor listed · $180K reported
  • Consistency: 33 of 35 current checks pass · 2 findings to review
  • Schedules: 11 filed schedules · includes major donors, foreign activity, grants, and executive pay
  • Filing history: 11 filing years from 2015 to 2025
  • Contacts: How to reach this organization
  • Money network: 16 filed money-flow records
  • Related organizations: 12 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.

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 — Financial Efficiency: Fundraising efficiency scored 53/100.
  • High — Sustainability: Operating margin scored 12/100.
  • Moderate — Sustainability: Total-asset coverage ratio scored 37/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 30/100.
  • Moderate — Sustainability: Officer compensation ratio scored 34/100.
  • Moderate — Transparency & Controls: Schedule A contributions reconciliation did not reconcile in the filed values.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.