Timothy Syndrome Alliance Inc

Nonprofit profile at a glance

EIN
862676717
IRS 990-EZ coverage
2022–2025
Forms available
Form 990-EZ 2025, Form 990-N 2021
Location
Bear River City, UT, USA
Phone
4357207871
Rating
43
Verdict
MIXED
Rating confidence
Moderate
Sector
Birth Defects and Genetic Diseases

Reported finances

Revenue
$107,134
Expenses
$60,806
Assets
$181,351
Liabilities
$18

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

Leadership & pay

7 people listed

Executive titles in this filing

  • KATHRINE TIMOTHY (PRESIDENT)

People named in this filing

  • KATHRINE TIMOTHY (PRESIDENT)
  • MARY ANN CICIARELLI (DIRECTOR)
  • LINSLEY GENTILE (SECRETARY)

Selected names, not a complete roster or a statement of current roles. Open leadership details for the complete filed list.

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

Overview

Mission

Our mission is to improve the diagnosis, treatment and care of individuals with cacna1c-related disorders, including timothy syndrome and longqt8, and to support the families and carers of those diagnosed.

What it reported doing in 2025

During the year, timothy syndrome foundation hosted family support conferences in september and october. The organization brought together approximately 25 families along with several physician and researcher speakers. These conferences provided a valuable opportunity for families to hear directly from medical professionals about the latest developments in treatment options and emerging areas of research. Families also had the opportunity to spend time with each other to talk and provide emotional support. The children had a chance to spend time with others like themselves and form meaningful bonds. As part of its commitment to equitable access, the organization covered expenses for several families, including travel, to ensure participation was not limited by financial or geographic barriers.

Operating model

Revenue model
Donor-supported. 99% of the money available for current operations came from contributions and gifts.
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

MIXED - The filed numbers largely add up and revenue comfortably covers expenses. A relatively small share of available resources goes toward mission work and a relatively small share of total spending goes to programs.

Rating breakdown

  • Financial Efficiency: 11
  • Transparency & Controls: 82
  • Sustainability: 81
  • Growth: 20

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 8.7%; rating input score 9
  • Program expense ratio: 13.6%; rating input score 14

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 52nd percentile among comparable filings
  • Major donor itemization: Limited

Sustainability

  • Operating margin: 43.2%; rating input score 89; 89th percentile among comparable filings
  • Total-asset coverage ratio: 2.98; rating input score 88; 88th percentile among comparable filings
  • Liabilities to assets ratio: 0; rating input score 48; 48th percentile among comparable filings
  • Officer compensation ratio: 0%; rating input score 63; 63rd percentile among comparable filings

Growth

  • Program expense growth: -4.3% per year; rating input score 0; 20th percentile among comparable filings
  • Revenue growth: -8.8% per year; rating input score 0; 5th percentile among comparable filings
  • Asset growth: 14.1% per year; rating input score 100; 69th percentile among comparable filings

Details

  • Where the money goes: 8.7% of revenue deployed · 13.6% of spending went to programs
  • Governance: Filed governance answers
  • Accomplishments: 1 filed program accomplishment · $8K in reported program spending
  • Leadership: top reported pay $0 · 7 people listed
  • Consistency: 8 of 8 current checks pass
  • Schedules: 2 filed schedules
  • Filing history: 4 filing years from 2022 to 2025
  • Contacts: How to reach this organization
  • 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 9/100.
  • High — Financial Efficiency: Program expense ratio scored 14/100.
  • High — Growth: Program expense growth scored 0/100.
  • High — Growth: Revenue growth scored 0/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 48/100.