Smith-Kingsmore Syndrome Foundation
Nonprofit profile at a glance
- EIN
- 842913037
- IRS 990 coverage
- 2022–2024
- Forms available
- Form 990 2024
- Location
- Cincinnati, OH, USA
- Phone
- 5137551705
- Rating
- 72
- Verdict
- SUPPORTED
- Rating confidence
- Moderate
- Sector
- Specifically Named Diseases
Reported finances
- Revenue
- $168,029
- Expenses
- $165,899
- Assets
- $271,115
- Liabilities
- $0
Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.
Leadership & pay
9 people listed
Executive titles in this filing
- Susan Dando (Executive Director)
- Nazira Kelly (Vice President)
- Sarah Lepore (President)
Highest reported compensation
- Kristen Groseclose (Director of Development): $36,050 total reported compensation
- Susan Dando (Executive Director): $22,500 total reported compensation
Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
Fund research to better understand Smith-Kingsmore syndrome and find treatments to improve patient quality of life and, ultimately, a cure.
What it reported doing in 2024
This year, Smith-Kingsmore Syndrome Foundation advanced its mission with a comprehensive scientific strategy and participation in key conferences to strengthen ties with the research and clinical community. We launched a multi-year drug repurposing initiative in Dr. Joanna Chius laboratory at the University of CaliforniaDavis, building on prior Foundation-funded work modeling SKS phenotypes and screening FDA-approved compounds; funded through the next two fiscal years, this is a major step toward identifying treatment options for individuals with SKS. We also began cataloging all known SKS variants to enhance understanding of genotypephenotype relationships and continued hosting events connecting families, clinicians, and researchers to advance progress toward effective treatments.
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.
- Includes noncash contributions: Reported contributions include donated property or goods.
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: 65
- Transparency & Controls: 92
- Accountability: 70
- Sustainability: 46
- Growth: 40
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 69.8%; rating input score 70
- Program expense ratio: 70.4%; rating input score 70
- Fundraising efficiency: $4.95 raised per $1 spent on fundraising; rating input score 22; 22nd percentile among comparable filings
Transparency & Controls
- Consistency checks: 100%; rating input score 100; 64th 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: 87.5%; rating input score 88; 24th percentile among comparable filings
- Governance controls: 4 of 9 controls in place; rating input score 44
- Conflict-of-interest policy: Pass
- Whistleblower policy: Fail
- Document-retention policy: Fail
- CEO compensation review process: Fail
- Other executive compensation review process: Fail
- Form 990 shared with the board: Pass
- Board meeting minutes documented: Pass
- Audit committee oversight: Pass
- Independent financial-statement audit: Fail
Sustainability
- Operating margin: 1.3%; rating input score 42; 42nd percentile among comparable filings
- Total-asset coverage ratio: 1.63; rating input score 54; 54th percentile among comparable filings
- Liabilities to assets ratio: 0; rating input score 80; 80th percentile among comparable filings
- Officer compensation ratio: 35.3%; rating input score 8; 8th percentile among comparable filings
Growth
- Program expense growth: -6.2% per year; rating input score 0; 15th percentile among comparable filings
- Revenue growth: 33.7% per year; rating input score 100; 94th percentile among comparable filings
- Asset growth: -33.8% per year; rating input score 0; 2nd percentile among comparable filings
Details
- Where the money goes: 69.8% of revenue deployed · 70.4% of spending went to programs
- Governance: 7 of 8 board members independent · 4 of 9 filing controls reported
- Programs: 1 filed program accomplishment · $117K in reported program spending
- Leadership: top reported pay $36K · 9 people listed
- Consistency: 23 of 23 current checks pass
- Schedules: 4 filed schedules · includes major donors
- Filing history: 3 filing years from 2022 to 2024
- Contacts: How to reach this organization
- Money network: 2 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.
- Moderate — Accountability: Governance controls: 5 of 9 not reported.
- High — Financial Efficiency: Fundraising efficiency scored 22/100.
- High — Growth: Program expense growth scored 0/100.
- Moderate — Sustainability: Operating margin scored 42/100.
- High — Growth: Asset growth scored 0/100.
- Review — Sustainability: Total-asset coverage ratio scored 54/100.
- High — Sustainability: Officer compensation ratio scored 8/100.