Smith-lemli-opitz Foundation

Nonprofit profile at a glance

EIN
232635206
IRS 990-EZ coverage
2018–2024
Forms available
Form 990 2023, Form 990-EZ 2024
Location
Fargo, ND, USA
Phone
7013671976
Rating
82
Verdict
STRONG
Rating confidence
Moderate
Sector
Arts, Culture, and Humanities N.E.C.

Reported finances

Revenue
$116,865
Expenses
$85,676
Assets
$228,547
Liabilities
$1,186

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

Leadership & pay

8 people listed

Executive titles in this filing

  • GRETCHEN NOAH (PRESIDENT)
  • KATE DUREN (VICE PRESIDENT)

People named in this filing

  • GRETCHEN NOAH (PRESIDENT)
  • KATE DUREN (VICE PRESIDENT)
  • AMY DINUNZIO (BOARD MEMBER)

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 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

Mission

The slo foundation works to improve the quality of life for the people with smith-lemli-opitz syndrome though education, family support, awareness, and funding research into the disorder.

What it reported doing in 2024

The smith-lemli-opitz (slo) foundation provides education and support services to families and medical professionals dealing with smith-lemli-opitz syndrome (slos). Originally, the smith-lemli-opitz (slo) foundation was founded in 1990 by 37 families who desired a network of support to exchange experiences and information about slos. Since then, the patient advocacy group has grown to more than 2,000 families in the united states and around the world. The slo foundations website (smithlemliopitz.org) is often a parent's first point of contact after their child has been newly diagnosed with slos. Within the website, families find a syndrome overview and related research articles, contact information for slos specialists, educational materials, and access to family mentors. The foundation sponsors an online library of conference videos and other webinars related to slos. The foundation has three active family support groups on facebook and is active in other various social media groups. This medium provides immediate support for families to ask questions and share in joyful times and in grief. The slo foundation hosts biennial family and scientific slos conferences around the country where physicians, scientists, and parents learn more about the syndrome and connect with each other. Another important mission of the slo foundation is to raise funds to promote research and better health treatments into the disorder.

Operating model

Revenue model
Donor-supported. 94% 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

STRONG - The filed numbers largely add up and a large share of available resources goes toward mission work. Reported officer compensation is a large share of total spending, which may reflect staffing concentration and liabilities are high compared with assets.

Rating breakdown

  • Financial Efficiency: 68
  • Transparency & Controls: 100
  • Sustainability: 70
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 59.7%; rating input score 60
  • Program expense ratio: 81.4%; rating input score 81

Transparency & Controls

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

Sustainability

  • Operating margin: 26.7%; rating input score 81; 81st percentile among comparable filings
  • Total-asset coverage ratio: 2.67; rating input score 87; 87th percentile among comparable filings
  • Liabilities to assets ratio: 0.01; rating input score 46; 46th percentile among comparable filings
  • Officer compensation ratio: 37.8%; rating input score 8; 8th percentile among comparable filings

Growth

  • Program expense growth: 2.2% per year; rating input score 100; 37th percentile among comparable filings
  • Revenue growth: 9.5% per year; rating input score 100; 65th percentile among comparable filings
  • Asset growth: 5.7% per year; rating input score 100; 47th percentile among comparable filings

Details

  • Where the money goes: 59.7% of revenue deployed · 81.4% of spending went to programs
  • Governance: Filed governance answers
  • Accomplishments: 1 filed program accomplishment · $70K in reported program spending
  • Leadership: top reported pay $0 · 8 people listed
  • Consistency: 8 of 8 current checks pass
  • Schedules: 3 filed schedules
  • Filing history: 6 filing years from 2018 to 2024
  • Contacts: How to reach this organization
  • Money network: 4 filed money-flow records
  • 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 — Sustainability: Officer compensation ratio scored 8/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 46/100.