Cardio-facio-cutaneous International

Nonprofit profile at a glance

EIN
161569293
IRS 990 coverage
2016–2024
Forms available
Form 990 2024, Form 990-EZ 2015
Location
St James, NY, USA
Rating
69
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Education N.E.C.

Official website

Reported finances

Revenue
$207,106
Expenses
$401,040
Assets
$344,835
Liabilities
$0

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

Leadership & pay

9 people listed

Executive titles in this filing

  • Troy Greisen (Former Executive Director)
  • Alexis Nash (President)
  • Jeff Kohler (Past President)
  • Pilar Magoulas (Vice President)

Highest reported compensation

  • Troy Greisen (Former Executive Director): $70,833 total reported compensation
  • Tuesdi Dyer (Executive Dir.): $19,624 total reported compensation

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

Overview

Mission

CFC International's mission is to improve the quality of life for individuals with Cardiofaciocutaneous Syndrome and their families through support, research, awareness, and education. Our vision is to advance understanding and treatment of CFC syndrome. We achieve our mission and seek our vision by providing comprehensive educational materials, a robust website, condition management webinars, and disseminate vital information - like peer-reviewed treatment guidelines - to diagnosed patients and caregivers. We improve access to experts in the management of CFC syndrome by hosting a biennial medical conference as well as at least one Rasopathy Clinic care event per year. Our patient families convene for support in multiple ways: through a Facebook support group, six to eight virtual support groups per month, and regional family meetups. Through our Medical Advisory Board, we strive to ensure that healthcare professionals have immediate access to the most current information, facilitatin

What it reported doing in 2024

We are a patient advocacy organization that supports families whose children have been diagnosed with Cardio-Facio-Cutaneous Syndrome (CFC syndrome). We offer education and resources through email, webinars, social media, published materials, and a website to support families as they manage this condition. We also provide financial assistance to families struggling with medical costs. Our organization hosts a family medical conference every two years and at least one clinical care weekend each year at a Rasopathy Clinic. These events allow families to connect and learn from medical professionals and researchers. We also provide scholarships to help families attend these events. Additionally, we run a private Facebook page, virtual support groups, and a monthly newsletter with helpful information and peer support. We organize family meetups around the world so families can form connections with one another. Families can apply for travel stipends to help with the costs of attending these meetups.We fund important research on CFC syndrome through a grant process and support researchers who need help finding patients for their studies. Our goal is to keep families informed about new treatments and therapies, giving hope to those affected by this rare condition and ensuring they receive the best care and support possible.

Operating model

Revenue model
Mixed. Its operating money came from several sources; no one source provided a clear majority.
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 - A large share of available resources goes toward mission work and the filed numbers largely add up. Few specific pay-setting methods are documented in the filing; unanswered boxes are not proof of absence and a relatively small share of total spending goes to programs.

Rating breakdown

  • Financial Efficiency: 73
  • Transparency & Controls: 65
  • Accountability: 72
  • Sustainability: 23
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 100%; rating input score 100
  • Program expense ratio: 52%; rating input score 52
  • Fundraising efficiency: Limited

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 64th 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: Limited
  • Grant itemization coverage: Limited
  • 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: 3 of 9 controls in place; rating input score 33
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Fail
    • Document-retention policy: Fail
    • CEO compensation review process: Fail
    • Other executive compensation review process: Fail
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Missing
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: -93.6%; rating input score 2; 2nd percentile among comparable filings
  • Total-asset coverage ratio: 0.86; rating input score 37; 37th percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 80; 80th percentile among comparable filings
  • Officer compensation ratio: 22.6%; rating input score 17; 17th percentile among comparable filings

Growth

  • Program expense growth: 9.1% per year; rating input score 100; 67th percentile among comparable filings
  • Revenue growth: 4.3% per year; rating input score 100; 49th percentile among comparable filings
  • Asset growth: 1.5% per year; rating input score 100; 31st percentile among comparable filings

Details

  • Where the money goes: 100% of revenue deployed · 52% of spending went to programs
  • Governance: 7 of 7 board members independent · 3 of 9 filing controls reported
  • Programs: 1 filed program accomplishment · $208K in reported program spending
  • Leadership: top reported pay $71K · 9 people listed · 0 of 6 pay-setting controls reported
  • Consistency: 25 of 25 current checks pass
  • Schedules: 6 filed schedules · includes major donors and executive pay
  • Filing history: 8 filing years from 2016 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.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • High — Transparency & Controls: Pay-setting controls scored 0/100.
  • Review — Financial Efficiency: Program expense ratio scored 52/100.
  • Moderate — Accountability: Governance controls: 5 of 8 not reported.
  • High — Sustainability: Operating margin scored 2/100.
  • Moderate — Sustainability: Total-asset coverage ratio scored 37/100.
  • High — Sustainability: Officer compensation ratio scored 17/100.