Wishes For Elliott DBA International SCN8A Alliance
Nonprofit profile at a glance
- EIN
- 471822559
- IRS 990 coverage
- 2022–2024
- Forms available
- Form 990 2024, Form 990-EZ 2020, Form 990-N 2019
- Location
- Washington, DC, USA
- Phone
- 2025990444
- Rating
- 70
- Verdict
- SUPPORTED
- Rating confidence
- Moderate
- Sector
- Epilepsy
Reported finances
- Revenue
- $902,175
- Expenses
- $496,581
- Assets
- $1,086,442
- Liabilities
- $9,549
Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.
Leadership & pay
9 people listed
Highest reported compensation
- Gabi Conecker (Executive Dir.): $100,000 total reported compensation
Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.
Overview
Mission
We work collaboratively to accelerate the pace of science on scn8a and related disorders in order to bring hope and improved outcomes for all those living with rare epilepsies and their families.
What it reported doing in 2024
Advocacy : our efforts, spanning both the broad range of developmental and epileptic encephalopathies (dees) and scn8a, include diverse advocacy efforts to both legislative and administrative policymakers. Our legislative advocacy includes multiple efforts addressing pending legislative actions and appropriations that affect supported research and support for families i.e., proposed medicaid changes as well as advocating for additional federal funding for translational epilepsy research. To ensure our community is heard, we have also provided multiple comments to federal agencies, including the fda, nih, and cdc, often but not exclusively in response to published rfis. A significant efforts have included a submission of data and family stories on scn8a and a cross-dee patient listening session with the fda. Additionally, we have held a critical path innovation meeting, in collaboration with our inchstone project researchers, to ensure appropriate tools exist to measure change in those profoundly impacted by diseases in clinical trials.
Operating model
- Revenue model
- Donor-supported. 95% of the money available for current operations came from contributions and gifts.
- Distribution model
- Hybrid. The nonprofit split its reported program spending across 74% for direct work, and 26% for grants.
- Includes noncash contributions: Reported contributions include donated property or goods.
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 a relatively small share of total spending goes to programs.
Rating breakdown
- Financial Efficiency: 48
- Transparency & Controls: 94
- Accountability: 68
- Sustainability: 73
- Growth: 100
Detailed rating inputs
Financial Efficiency
- Mission deployment rate: 32.1%; rating input score 32
- Program expense ratio: 58.3%; rating input score 58
- Fundraising efficiency: $323.32 raised per $1 spent on fundraising; rating input score 94; 94th 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: 98.9%; rating input score 99; 48th percentile among comparable filings
- Major donor itemization: Yes; rating input score 100
- Related-party transparency: Limited
Accountability
- Independent voting board: 88.9%; rating input score 89; 22nd percentile among comparable filings
- Governance controls: 3 of 8 controls in place; rating input score 38
- Conflict-of-interest policy: Fail
- Whistleblower policy: Fail
- Document-retention policy: Fail
- CEO compensation review process: NotApplicable
- Other executive compensation review process: Pass
- Form 990 shared with the board: Pass
- Board meeting minutes documented: Pass
- Audit committee oversight: Missing
- Independent financial-statement audit: Fail
Sustainability
- Operating margin: 45%; rating input score 91; 91st percentile among comparable filings
- Total-asset coverage ratio: 2.19; rating input score 67; 67th percentile among comparable filings
- Liabilities to assets ratio: 0.01; rating input score 70; 70th percentile among comparable filings
- Officer compensation ratio: 20.1%; rating input score 15; 15th percentile among comparable filings
Growth
- Program expense growth: 21.1% per year; rating input score 100; 84th percentile among comparable filings
- Revenue growth: 35.3% per year; rating input score 100; 94th percentile among comparable filings
- Asset growth: 42.6% per year; rating input score 100; 95th percentile among comparable filings
Details
- Where the money goes: 32.1% of revenue deployed · 58.3% of spending went to programs
- Governance: 8 of 9 board members independent · 3 of 8 filing controls reported
- Programs: 3 filed program accomplishments · $290K in reported program spending
- Leadership: top reported pay $100K · 9 people listed
- Consistency: 27 of 27 current checks pass
- Schedules: 6 filed schedules · includes major donors and grants
- Filing history: 3 filing years from 2022 to 2024
- Contacts: How to reach this organization
- Money network: 3 filed money-flow records
- Related organizations: 1 filed related-organization link
- 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 32/100.
- Review — Financial Efficiency: Program expense ratio scored 58/100.
- Moderate — Accountability: Governance controls: 4 of 7 not reported.
- High — Sustainability: Officer compensation ratio scored 15/100.