Kcnt1 Slack Epilepsy Foundation Inc

Nonprofit profile at a glance

EIN
842748218
IRS 990 coverage
2023–2025
Forms available
Form 990 2025, Form 990-EZ 2022, Form 990-N 2021
Location
Scottsdale, AZ, USA
Phone
9492689770
Rating
76
Verdict
SUPPORTED
Rating confidence
Standard
Sector
Health

Reported finances

Revenue
$1,525,375
Expenses
$485,949
Assets
$2,044,774
Liabilities
$0

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

Leadership & pay

10 people listed

Executive titles in this filing

  • Sarah Drislane (Executive Director)
  • Justin West (President)

Highest reported compensation

  • Sarah Drislane (Executive Director): $28,125 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 accelerate the development of effective therapies and improve outcomes for individuals affected by KCNT1 related epilepsy and neurodevelopmental disorders. And advances research, supports families, and builds the collaborative infrastructure necessary to enable clinical trials

What it reported doing in 2025

In 2025, the Foundation advanced its mission through four interrelated program areas supporting research advancement, data infrastructure, family education and engagement, and field building activities for KCNT1 related epilepsy and neurodevelopmental disorders. Program activities included: (i) support for investigator initiated research through grants to external academic and research institutions (as reported on Schedule I) as well as sponsored research projects with academic and commercial partners; (ii) data infrastructure, registry, and natural history aligned activities intended to strengthen research coordination and readiness for future clinical trials; (iii) family education, patient engagement, and community support, including educational programming and limited need based assistance to reduce barriers to participation in educational and advocacy opportunities; and (iv) field building, collaboration, and scientific engagement activities, including participation in scientific advisory boards, research convenings, and coordination with clinical, academic, and industry stakeholders to align priorities and identify research gaps. The Foundation does not provide clinical care and does not directly conduct clinical research. Program activities are carried out through collaborations with external clinical, academic, and research partners and through mission aligned program operations. Summary of Impact Through its programs, the KCNT1 Epilepsy Foundation acted as a research accelerator, convener, and community partnersupporting early stage research, strengthening data infrastructure, engaging families, and fostering collaboration to advance therapeutic development and improve outcomes for individuals affected by KCNT1 related disorders

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 99% 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

SUPPORTED - 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 some filing-based governance responses are negative or unanswered.

Rating breakdown

  • Financial Efficiency: 51
  • Transparency & Controls: 100
  • Accountability: 84
  • Sustainability: 85
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 27.3%; rating input score 27
  • Program expense ratio: 78.7%; rating input score 79
  • Fundraising efficiency: $118.75 raised per $1 spent on fundraising; rating input score 86; 86th 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: Limited
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 90%; rating input score 90; 26th percentile among comparable filings
  • Governance controls: 6 of 8 controls in place; rating input score 75
    • 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: Missing
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: 68.1%; rating input score 95; 95th percentile among comparable filings
  • Total-asset coverage ratio: 4.21; rating input score 81; 81st percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 88; 88th percentile among comparable filings
  • Officer compensation ratio: 5.8%; rating input score 49; 49th percentile among comparable filings

Growth

  • Program expense growth: 73% per year; rating input score 100; 97th percentile among comparable filings
  • Revenue growth: 63.2% per year; rating input score 100; 97th percentile among comparable filings
  • Asset growth: 61.3% per year; rating input score 100; 96th percentile among comparable filings

Details

  • Where the money goes: 27.3% of revenue deployed · 78.7% of spending went to programs
  • Governance: 9 of 10 board members independent · 6 of 8 filing controls reported
  • Programs: 1 filed program accomplishment · $382K in reported program spending
  • Leadership: top reported pay $28K · 10 people listed
  • Consistency: 25 of 25 current checks pass
  • Schedules: 4 filed schedules · includes major donors
  • Filing history: 3 filing years from 2023 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 27/100.
  • Review — Accountability: Governance controls: Independent financial-statement audit not reported.
  • Moderate — Sustainability: Officer compensation ratio scored 49/100.