CureCMT

Legal name: Hereditary Neuropathy Foundation Inc

Nonprofit profile at a glance

EIN
134137654
IRS 990 coverage
2010–2024
Official website data refreshed
Sep 2026
Forms available
Form 990 2024, Form 990-EZ 2009
Location
Midlothian, VA, US
Phone
2127228396
Rating
84
Verdict
STRONG
Rating confidence
Moderate
Sector
Fund Raising and/or Fund Distribution

Official website

Reported finances

Revenue
$545,418
Expenses
$894,903
Assets
$1,016,066
Liabilities
$6,182

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

Leadership & pay

13 people listed

Executive titles in this filing

  • COURTNEY HOLLETT (EXECUTIVE DIRECTOR)

Highest reported compensation

  • COURTNEY HOLLETT (EXECUTIVE DIRECTOR): $75,000 total reported compensation
  • ALLISON MOORE (FOUNDER AND CHIEF EXECUTIV): $52,675 total reported compensation

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

Overview

Mission

Supporting patients and families with critical information to improve quality of life, and funding research that will lead to treatments and cures.

What it reported doing in 2024

Research programs are as follows: therapeutic research in accelerated discovery (triad) continues to serve as hnf's primary translational research accelerator, supporting the development of essential research tools (including ipscs and animal models), therapeutic candidates, drug screening initiatives, gene therapy programs, and digital health technology innovations. The program maintains strong partnerships with academic institutions, regulatory agencies, and industry collaborators and advances key scientific initiatives in biomarker development, clinical endpoint refinement, and therapy translation. Triad also leads the annual cmt clinical trial readiness summit, which brings together global experts to align on regulatory expectations, optimize trial design, and accelerate therapy development. The global registry for inherited neuropathies (grin) continues to grow as an international cmt patient registry, capturing natural history data and providing comprehensive patient-reported, clinical, digital, and genetic datasets. Grin plays a critical role in clinical trial readiness, supporting feasibility assessments, endpoint development, and patient recruitment for therapeutic development programs. Grin insights and data infrastructure inform key sessions and working groups at the cmt clinical trial readiness summit, helping researchers and industry partners address unmet needs and strengthen future trial strategies. The cmt biobank continues to expand its patient sample collection, including blood, saliva, tissue, skin fibroblasts, ipscs, and other biospecimens donated by individuals with cmt. These samples are processed and stored under strict quality-controlled protocols and remain securely linked to grin clinical, digital, and genetic data. This integrated resource supports pre-competitive biomarker discovery, molecular research, and digital biomarker validation, enabling researchers and industry partners to accelerate therapeutic development. Findings and collaborative opportunities from the biobank are regularly highlighted at the cmt clinical trial readiness summit, where cross-sector partners align on biomarker priorities and strategies to advance future treatments.

Operating model

Revenue model
Donor-supported. 99% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 60% for direct work, and 40% for grants.

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 expenses are high relative to revenue.

Rating breakdown

  • Financial Efficiency: 92
  • Transparency & Controls: 72
  • Accountability: 95
  • Sustainability: 26
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 100%; rating input score 100
  • Program expense ratio: 90%; rating input score 90
  • Fundraising efficiency: $17.16 raised per $1 spent on fundraising; rating input score 54; 54th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 93.3%; rating input score 93; 22nd percentile among comparable filings
  • Pay-setting controls: Limited
  • 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: 98.6%; rating input score 99; 47th 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: 8 of 9 controls in place; rating input score 89
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: Pass
    • Other executive compensation review process: Fail
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: -64.1%; rating input score 2; 2nd percentile among comparable filings
  • Total-asset coverage ratio: 1.14; rating input score 47; 47th percentile among comparable filings
  • Liabilities to assets ratio: 0.01; rating input score 72; 72nd percentile among comparable filings
  • Officer compensation ratio: 14.3%; rating input score 25; 25th percentile among comparable filings

Growth

  • Program expense growth: 5.8% per year; rating input score 100; 46th percentile among comparable filings
  • Revenue growth: 2.9% per year; rating input score 100; 30th percentile among comparable filings
  • Asset growth: 10.5% per year; rating input score 100; 60th percentile among comparable filings

Details

  • What they do: 7 programs and campaigns described on the official site · 1 operating location identified
  • Where the money goes: 100% of revenue deployed · 90% of spending went to programs
  • Governance: 12 of 12 board members independent · 8 of 9 filing controls reported
  • Programs: 1 filed program accomplishment · $806K in reported program spending
  • Leadership: top reported pay $75K · 13 people listed
  • Consistency: 34 of 35 current checks pass · 1 finding to review
  • Schedules: 7 filed schedules · includes major donors, foreign activity, and grants
  • Filing history: 15 filing years from 2010 to 2024
  • Contacts: How to reach this organization
  • Money network: 5 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: Foreign activity oversight: 8 of 8 not reported.
  • High — Sustainability: Operating margin scored 2/100.
  • Review — Financial Efficiency: Fundraising efficiency scored 54/100.
  • Review — Accountability: Governance controls: Other executive compensation review process not reported.
  • Moderate — Sustainability: Total-asset coverage ratio scored 47/100.
  • High — Sustainability: Officer compensation ratio scored 25/100.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.