Is it real?
Yes. Exemption reinstated (2019-05-15). Per the IRS revocation list. Latest filing on record: FY2024. IRS ruling in Dec 2019.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
58 cents of each dollar spent went to programs.
Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.
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Who runs it and what they're paid
9 people listed on the 990; $100K paid to officers and key staff.
Gabi Conecker’s $100K as Executive Dir. is at the 79th percentile of top reported officer pay among 901 $100K–1M diseases & disorders nonprofits. Peer set: organizations in the same NTEE major field of work and revenue-size band, compared on each org’s own highest-paid officer/key-employee, from Form 990 Part VII / 990-PF Part VIII. Descriptive placement, not a verdict on whether the pay is appropriate.
Compensation history total reportable pay by year · 3 named individuals · Part VII
| Name | FY2024 | FY2023 | FY2022 | FY2021 |
|---|---|---|---|---|
| Gabi Conecker | $100,000 | $100,000 | — | — |
| Gabrielle Conecker | — | — | $100,000 | $96,154 |
| Jayetta Hecker | — | $11,005 | $50,000 | $48,077 |
Total reportable compensation (Form 990 Part VII column D / Schedule J column E) by filing year, matched by name within this organization. The Schedule J base / bonus / deferred breakdown is not parsed into this dataset.
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Questions the 990 asks
The form asks each of these directly. These are the filed answers.
- Family or business ties among officersPt VI · Ln 2No
- Top official's pay set by an independent reviewPt VI · Ln 15aYes
Programs and updates
Accelerates rare epilepsy research and science to improve lives and outcomes for affected families.
Questions for Wishes for Elliott
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Research
Since 2015, the international SCN8A alliance has helped build the core of researchers committed to finding answers by funding early career researchers. With 9 of our grantees still focused on SCN8A and related research after their grants are completed, these early career researchers are opening their labs and conducting novel research on…
Education
We work to improve the understanding of SCN8A by ensuring that stakeholders foster relationships break down barriers and collaborate to find treatments and improve the quality of life for all. Education is a two way street.
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.
Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2024 990, line by line.
Download 990
| Line | Start FY24 | End FY24 |
|---|---|---|
| Cash and savingsLn 1–2 | $674K | $1.0M |
| InvestmentsLn 11–13 | $0 | |
| Land, buildings, equipmentLn 10c | $0 | |
| Total assetsLn 16 | $689K | $1.1M |
| LiabilitiesLn 26 | $18K | $10K |
| Net assetsLn 32 | $671K | $1.1M |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $76K | $76K | ||
| Grants to domestic individualsLn 2 | $0 | |||
| Grants and assistance to foreign recipientsLn 3 | $0 | |||
| Benefits paid to or for membersLn 4 | $0 | |||
| Pay of current officers, directors and key staffLn 5 | $100K | $100K | ||
| Pay of disqualified personsLn 6 | $0 | |||
| Other salaries and wagesLn 7 | $6K | $2K | $4K | |
| Pension plan contributionsLn 8 | $0 | |||
| Other employee benefitsLn 9 | $493 | $493 | ||
| Payroll taxesLn 10 | $9K | $184 | $9K | |
| Management feesLn 11a | $0 | |||
| Legal feesLn 11b | $0 | |||
| Accounting feesLn 11c | $5K | $5K | ||
| Lobbying feesLn 11d | $0 | |||
| Professional fundraising feesLn 11e | $0 | |||
| Investment management feesLn 11f | $0 | |||
| Other fees for servicesLn 11g | $0 | |||
| Advertising and promotionLn 12 | $55 | $55 | ||
| Office expensesLn 13 | $0 | |||
| Information technologyLn 14 | $5K | $1K | $3K | |
| RoyaltiesLn 15 | $0 | |||
| OccupancyLn 16 | $0 | |||
| TravelLn 17 | $19K | $2K | $17K | |
| Travel and entertainment for public officialsLn 18 | $0 | |||
| Conferences, conventions and meetingsLn 19 | $7K | $1K | $6K | |
| InterestLn 20 | $0 | |||
| Payments to affiliatesLn 21 | $0 | |||
| Depreciation, depletion and amortizationLn 22 | $0 | |||
| InsuranceLn 23 | $0 | |||
| Other expenses (24a–d)Ln 24 | $269K | $207K | $59K | $3K |
| All other expensesLn 24e | $89 | $89 | ||
| Total functional expensesLn 25 | $497K | $290K | $204K | $3K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2024 Latest Viewing | $902K | $497K | $406K | $1.1M | 990 PDF |
| FY2023 | $586K | $311K | $276K | $671K | 990 PDF |
| FY2022 | $629K | $260K | $369K | $452K | 990 PDF |
| FY2021 | $329K | $218K | $111K | $182K | 990 PDF |
| FY2020 | $75K | $72K | 990 PDF |
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Schedules filed Part IV
See the full FY2024 990 (6 parts)
Part I · Summary $902,175 revenue, 12 lines filed
Part VI · Governance 8 of 9 board members independent, 3 to look at
Part VIII · Statement of revenue $902,175 across 10 lines filed
Part IX · Statement of functional expenses $496,581 across 31 lines filed
Part X · Balance sheet $1,086,442 assets, 20 lines filed
Part XI · Reconciliation of net assets $1,076,893 net assets at year end
Form 990 e-file (XML) FY2024 from the IRS · Classification, formation year and address from the IRS Business Master File
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