Trisomy 18 Foundation
Legal name: Trisomy 18 Support Inc Dba Trisomy 18 Foundation
Nonprofit profile at a glance
- EIN
- 770600393
- IRS 990 coverage
- 2010–2024
- Official website data refreshed
- Jul 2026
- Forms available
- Form 990 2024
- Location
- Flushing, MI, USA
- Phone
- 7038787013
- Rating
- 71
- Verdict
- SUPPORTED
- Rating confidence
- Moderate
- Sector
- Down Syndrome
Reported finances
- Revenue
- $90,139
- Expenses
- $85,443
- Assets
- $61,210
- Liabilities
- $596
Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.
Leadership & pay
4 people listed
Executive titles in this filing
- KRISTINE SHAUGHNESSY (EXECUTIVE DIRECTOR)
Highest reported compensation
- KRISTINE SHAUGHNESSY (EXECUTIVE DIRECTOR): $50,160 total reported compensation
Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
The Trisomy 18 Foundation helps to improve the lives of the children and families impacted by Trisomy 18 by providing support and connecting families, advocating for compassionate, supportive care, and advancing research into the future of Trisomy 18.
What it reported doing in 2024
Education and support programs: trisomy 18's nationally-recognized program supports and educates both patient families and medical providers who treat families and children with trisomy 18 though direct service calls to support program staff, workshops, public presentations, educational materials and technology enabled peer support programs.the research advocacy and public engagement program: this program supports constituent engagement in the research and health policy-making process at federal and state level on legislative and regulatory initiatives that impact the lives of families and their children with trisomy 18.this program involves and engages the public in national awareness campaigns to support our cause to make trisomy 18 a preventable and treatable condition so that less families lose their precious newborns and infants to this condition. Volunteers are supported in hosting special awareness and fundraising events benefitting the foundation in locations across the united states. These events help develop and expand philanthropic partnerships to accelerate progress toward treatments and improved health outcomes for children impacted by trisomy 18 diagnosis.
Operating model
- Revenue model
- Donor-supported. 100% 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
SUPPORTED - The filed numbers largely add up and a large share of available resources goes toward mission work. Some filing-based governance responses are negative or unanswered and fundraising costs are high for each dollar raised.
Rating breakdown
- Financial Efficiency: 67
- Transparency & Controls: 92
- Accountability: 69
- Sustainability: 39
- Growth: 20
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 66.7%; rating input score 67
- Program expense ratio: 70.4%; rating input score 70
- Fundraising efficiency: $10.57 raised per $1 spent on fundraising; rating input score 54; 54th 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: 100%; rating input score 100; 64th percentile among comparable filings
- Governance controls: 2 of 8 controls in place; rating input score 25
- Conflict-of-interest policy: Fail
- Whistleblower policy: Fail
- Document-retention policy: Fail
- 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: Missing
- Independent financial-statement audit: Fail
Sustainability
- Operating margin: 5.2%; rating input score 61; 61st percentile among comparable filings
- Total-asset coverage ratio: 0.72; rating input score 20; 20th percentile among comparable filings
- Liabilities to assets ratio: 0.01; rating input score 28; 28th percentile among comparable filings
- Officer compensation ratio: 58.7%; rating input score 6; 6th percentile among comparable filings
Growth
- Program expense growth: -4% per year; rating input score 0; 40th percentile among comparable filings
- Revenue growth: -2.2% per year; rating input score 0; 52nd percentile among comparable filings
- Asset growth: 10.6% per year; rating input score 100; 81st percentile among comparable filings
Details
- What they do: 4 programs and campaigns described on the official site · 1 operating location identified
- Where the money goes: 66.7% of revenue deployed · 70.4% of spending went to programs
- Governance: 4 of 4 board members independent · 2 of 8 filing controls reported
- Programs: 1 filed program accomplishment · $60K in reported program spending
- Leadership: top reported pay $50K · 4 people listed
- Consistency: 19 of 19 current checks pass
- Schedules: 4 filed schedules · includes major donors
- Filing history: 14 filing years from 2010 to 2024
- Contacts: How to reach this organization
- Money network: 1 filed money-flow record
- 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 — Accountability: Governance controls: 5 of 7 not reported.
- Review — Financial Efficiency: Fundraising efficiency scored 54/100.
- High — Growth: Program expense growth scored 0/100.
- High — Growth: Revenue growth scored 0/100.
- High — Sustainability: Total-asset coverage ratio scored 20/100.
- High — Sustainability: Officer compensation ratio scored 6/100.
- High — Sustainability: Liabilities to assets ratio scored 28/100.