CACNA1A Foundation

Nonprofit profile at a glance

EIN
844985747
IRS 990 coverage
2021–2025
Official website data refreshed
Jul 2026
Forms available
Form 990 2025, Form 990-EZ 2020
Location
Norwalk, CT, USA
Phone
2039696552
Rating
72
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Birth Defects and Genetic Diseases

Official website

Reported finances

Revenue
$710,127
Expenses
$390,485
Assets
$1,008,357
Liabilities
$78,125

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

Leadership & pay

11 people listed

Executive titles in this filing

  • Shira Johnson (Executive Director)
  • Lisa Manaster (President)
  • Sunitha Malepati (Vice President & Treasurer)

Highest reported compensation

  • Shira Johnson (Executive Director): $42,073 total reported compensation

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

Overview

Mission

CACNA1A Foundation is a parent-led 501(c)(3) non-profit. We are dedicated to creating awareness and accelerating research toward treatments and a cure for CACNA1A-related disorders.

What it reported doing in 2025

Conference and Other Programs: See Schedule O.

Operating model

Revenue model
Donor-supported. 84% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 62% for direct work, and 38% for grants.

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 fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 46
  • Transparency & Controls: 89
  • Accountability: 90
  • Sustainability: 71
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 38.2%; rating input score 38
  • Program expense ratio: 65.6%; rating input score 66
  • Fundraising efficiency: $6.93 raised per $1 spent on fundraising; rating input score 24; 24th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 90.9%; rating input score 91; 10th percentile among comparable filings
  • Pay-setting controls: Limited
  • Foreign activity oversight: Limited
  • Grant itemization coverage: 100%; rating input score 100; 78th 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: 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: Fail
    • Other executive compensation review process: NotApplicable
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Fail

Sustainability

  • Operating margin: 45%; rating input score 89; 89th percentile among comparable filings
  • Total-asset coverage ratio: 2.58; rating input score 71; 71st percentile among comparable filings
  • Liabilities to assets ratio: 0.08; rating input score 38; 38th percentile among comparable filings
  • Officer compensation ratio: 10.8%; rating input score 35; 35th percentile among comparable filings

Growth

  • Program expense growth: 9.2% per year; rating input score 100; 55th percentile among comparable filings
  • Revenue growth: 17.1% per year; rating input score 100; 78th percentile among comparable filings
  • Asset growth: 20.2% per year; rating input score 100; 79th percentile among comparable filings

Details

  • What they do: 6 programs and campaigns described on the official site · 1 operating location identified
  • Where the money goes: 38.2% of revenue deployed · 65.6% of spending went to programs
  • Governance: 10 of 10 board members independent · 6 of 8 filing controls reported
  • Programs: 3 filed program accomplishments · $256K in reported program spending
  • Leadership: top reported pay $42K · 11 people listed
  • Consistency: 24 of 25 current checks pass · 1 finding to review
  • Schedules: 4 filed schedules · includes major donors and grants
  • Filing history: 5 filing years from 2021 to 2025
  • 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.

  • Moderate — Financial Efficiency: Mission deployment rate scored 38/100.
  • High — Financial Efficiency: Fundraising efficiency scored 24/100.
  • Review — Accountability: Governance controls: 2 of 8 not reported.
  • Review — Transparency & Controls: Domestic grant itemization did not reconcile in the filed values.
  • Moderate — Sustainability: Officer compensation ratio scored 35/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 38/100.