The Neuromuscular Disease Foundation

Nonprofit profile at a glance

EIN
061789643
IRS 990 coverage
2016–2024
Forms available
Form 990 2024
Location
Beverly Hills, CA, USA
Phone
3107211605
Rating
73
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Fund Raising and/or Fund Distribution

Official website

Reported finances

Revenue
$65,419
Expenses
$352,447
Assets
$660,321
Liabilities
$1,273

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

Leadership & pay

10 people listed

Executive titles in this filing

  • Coleman Kennedy (CEO)

People named in this filing

  • Navid Rachman (Director)
  • Tara Voogel (Secretary)
  • Amy Curran (Director)

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 NEUROMUSCULAR DISEASE FOUNDATIONS (NDF) MISSION mission is to enhance the quality of the lives of people living with GNE Myopathy (also known as HIBM) through advocacy, education, outreach, and funding for critical research focused on treatments and a cure.

What it reported doing in 2024

Patient & Carrier Advocacy: NDF strives to create a two-way connection between patients and scientists in order to maximize patient understanding about the latest research and treatment options being developed; and for physicians, scientists, and pharmaceutical companies to gain a better perspective, not only about patients needs and experiences, but also about how this impacts families as well.

Operating model

Revenue model
Mixed. Its operating money came from several sources; no one source provided a clear majority.
Distribution model
Hybrid. The nonprofit split its reported program spending across 41% for direct work, and 59% for grants.

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 the filing reports few safeguards for money sent abroad.

Rating breakdown

  • Financial Efficiency: 90
  • Transparency & Controls: 62
  • Accountability: 88
  • Sustainability: 24
  • Growth: 0

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 100%; rating input score 100
  • Program expense ratio: 90.2%; rating input score 90
  • Fundraising efficiency: $4.38 raised per $1 spent on fundraising; rating input score 37; 37th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd 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: 1 of 8 controls in place; rating input score 12
    • Claims monitoring procedures: Pass
    • 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; 80th 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: 5 of 7 controls in place; rating input score 71
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • 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: -438.8%; rating input score 8; 8th percentile among comparable filings
  • Total-asset coverage ratio: 1.87; rating input score 33; 33rd percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 33; 33rd percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 60; 60th percentile among comparable filings

Growth

  • Program expense growth: -0.7% per year; rating input score 0; 49th percentile among comparable filings
  • Revenue growth: -10.6% per year; rating input score 0; 31st percentile among comparable filings
  • Asset growth: -3.3% per year; rating input score 0; 25th percentile among comparable filings

Details

  • Where the money goes: 100% of revenue deployed · 90.2% of spending went to programs
  • Governance: 3 of 3 board members independent · 5 of 7 filing controls reported
  • Programs: 3 filed program accomplishments · $318K in reported program spending
  • Leadership: top reported pay $0 · 10 people listed · 0 of 6 pay-setting controls reported
  • Consistency: 21 of 21 current checks pass
  • Schedules: 7 filed schedules · includes major donors, foreign activity, grants, and executive pay
  • Filing history: 9 filing years from 2016 to 2024
  • Contacts: How to reach this organization
  • Money network: 3 filed money-flow records
  • Related organizations: 3 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: Pay-setting controls scored 0/100.
  • High — Transparency & Controls: Foreign activity oversight: 7 of 8 not reported.
  • Moderate — Financial Efficiency: Fundraising efficiency scored 37/100.
  • High — Sustainability: Operating margin scored 8/100.
  • High — Growth: Program expense growth scored 0/100.
  • High — Growth: Revenue growth scored 0/100.
  • Review — Accountability: Governance controls: Independent financial-statement audit not reported.
  • High — Growth: Asset growth scored 0/100.
  • Moderate — Sustainability: Total-asset coverage ratio scored 33/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 33/100.