Civic Intelligence

Wishes for Elliott

990 • Fiscal year 2023 • EIN 47-1822559

Jan 01, 2023 to Dec 31, 2023 • Filed on Oct 14, 2024

Organization ProfileSCN8AALLIANCE.ORG
1234 Crittenden St NWWashington, DC 20011

(202) 250-0599

Siviq Scores

Scores are not available for this record yet.

Balance Sheet

Assets

Up

$689,190

Up $235,313 (+52%) from 2022

Net Assets

Up

$671,299

Up $219,651 (+49%) from 2022

Liabilities

Up

$17,891

Up $15,662 (+703%) from 2022

Revenue And Expenses

Revenue

Down

$586,220

Down $43,164 (-6.9%) from 2022

Expenses

Up

$310,707

Up $50,643 (+19%) from 2022

Net Income

Down

$275,513

Down $93,807 (-25%) from 2022

Historical Trend

Balance Sheet Trend

The highlighted filing sits inside the broader history for assets, liabilities, and net assets.

$1.5M$1.0M$500K$0Assets 2020: $71,779Liabilities 2020: $0Net Assets 2020: $71,7792020Assets 2021: $202,042Liabilities 2021: $19,619Net Assets 2021: $182,4232021Assets 2022: $453,877Liabilities 2022: $2,229Net Assets 2022: $451,6482022Assets 2023: $689,190Liabilities 2023: $17,891Net Assets 2023: $671,2992023Assets 2024: $1,086,442Liabilities 2024: $9,549Net Assets 2024: $1,076,8932024

Highlighted filing

2023

Assets$689,190
Liabilities$17,891
Net Assets$671,299
Open 2023 Filing

Operations Trend

Revenue, expenses, and net income across loaded years, with this filing highlighted.

$1.0M$500K$0Revenue 2020: $74,786Expenses 2020: $21,037Net Income 2020: $53,7492020Revenue 2021: $328,884Expenses 2021: $218,240Net Income 2021: $110,6442021Revenue 2022: $629,384Expenses 2022: $260,064Net Income 2022: $369,3202022Revenue 2023: $586,220Expenses 2023: $310,707Net Income 2023: $275,5132023Revenue 2024: $902,175Expenses 2024: $496,581Net Income 2024: $405,5942024

Highlighted filing

2023

Revenue$586,220
Expenses$310,707
Net Income$275,513
Open 2023 Filing
Jump To
Filing Snapshot
Filing Period
Jan 1, 2023 to Dec 31, 2023
Signed
Oct 14, 2024
Return Version
2023v5.1
Gross Receipts
$586,220
Mission and Program 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.

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$453,652$674,188▲ $220,536
Accounts Receivable-$15,000-
Savings and Temporary Cash Investments-$0-
Other Notes and Loans Receivable, Net-$0-
Pledges and Grants Receivable-$0-
Receivable From Disqualified Prsn-$0-
Receivables From Officers Etc-$0-
Investments Other Securities-$0-
Investments Program Related-$0-
Investments in Publicly Traded Securities-$0-
Land, Buildings, and Equipment, Net-$0-
Intangible Assets-$0-
Inventories for Sale or Use-$0-
Prepaid Expenses and Deferred Charges-$0-
Total Assets$453,877$689,190▲ $235,313
Other Assets Total$225$2▼ $223
Liabilities
Accounts Payable and Accrued Expenses-$12,685-
Other Liabilities$2,229$5,206▲ $2,977
Total Liabilities$2,229$17,891▲ $15,662
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$181,660$401,811▲ $220,151
Net Assets With Donor Restrictions$269,988$269,488▼ $500
Total Net Assets Fund Balance$451,648$671,299▲ $219,651
Total Liabilities and Net Assets / Fund Balance$453,877$689,190▲ $235,313
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseTotal
Gabi ConeckerExecutive DirectorFT$100,000$100,000
JayEtta HeckerChairmanFT$11,005$11,005

Board Members and Trustees

NameTitle
Anne Thompson HellerDirector
Ariel GibbonsDirector
Eric WengertDirector
Madeleine OudinDirector
Mandy MillsDirector
Michael HalpernDirector
Michael HammerDirector
Mohammad Nabeel MiskeenyarDirector
Revenue and Support

Revenue Composition

Contributions and Grants
$585,540
Program Service Revenue
$0
Investment Income
$0
Other Revenue
$680
All Other Contributions
$585,540
Change in Net Assets
$275,513
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$164,996
Salaries, Compensation, and Employee Benefits$139,811
Total Fundraising Expense$18,516
Grants and Similar Amounts Paid$5,900
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Current Officers, Directors, Trustees, and Key Employees$77,704$16,651$16,650$111,005
Fees for Services Other$98,733$4,852-$103,585
Advertising$18,794$794-$19,588
Other Salaries and Wages$18,360$-589-$17,771
Information Technology$8,779$6,030$174$14,983
Travel$8,146$3,308-$11,454
Payroll Taxes$7,725$1,655$1,655$11,035
Grants to Domestic Orgs$5,900--$5,900
Fees for Services Accounting-$4,403-$4,403
Conferences and Meetings$3,502$394-$3,896
Other Expenses$967$795$37$795
Total Functional Expenses$251,552$40,639$18,516$310,707
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
Tremendous IncNew York, NY--$5,900
Fundraising, Events, and Gaming
Fundraising activities
No
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Insider Transactions and Loans

Loans and Receivables

Line ItemBeginningEndChange
Receivables from Disqualified Persons-$0-
Receivables from Officers, Directors, Trustees, and Key Employees-$0-
Debt and Bond Financing

Other Reported Liabilities

LiabilityAmount
Credit Card$5,206
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Backup withholding compliance
Yes
Business relationship with 35% controlled entity
No
Business relationship with family members
No
Business relationship with organization members
No
Material changes to governing documents
No
Compensation from other sources disclosed
No
CEO compensation reviewed
Yes
Other officer compensation reviewed
Yes
Conflict-of-interest policy
No
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Form 990, Part VI, Section B, Line 11B

“Form 990 will be reviewed by the external accounting cfo and the organization?s board of directors and management team before e?filing.”

Form 990, Part VI, Section C, Line 19

“No documents available to the public.”

Filing and Contact Details

Filer

Filer Name
Decoding Developmental Epilepsies
EIN
47-1822559
Phone
2022500599
Address
1234 Crittenden St NW, Washington, DC 20011

Signing Officer

Name
Gabrielle A Conecker
Title
Executive Director
Signed
2024-10-14
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Gabrielle A Conecker
Formed
2019
Legal Domicile
Dc
Voting Board Members
10
Independent Board Members
8
Employees
5

Preparer

Firm
Attolero LLC
Address
2105 Water Ridge Parkway Suite 570, Charlotte, NC 28217
Preparer
Robert Bales
Phone
7046412949
Supplemental Narrative

Additional Explanations

Form 990, Part XI, Line 9

“Change in Restricted Net Assets = -$55862”

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IRS990/ProgSrvcAccomActy2Grp/Desc0EDUCATION: 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. WE LEARN FROM FAMILIES AND WE PROVIDE OPPORTUNITIES FOR FAMILIES TO ENGAGE WITH RESEARCHERS PHARMA CLINICIANS REGULATORS AND BEYOND. WE PULL DOWN SILOS THAT STALL PROGRESS AND ENSURE ALL ARE WORKING WITH THE UTMOST SPEED TO REACH OUR GOAL A CURE FOR OUR CHILDREN. FOR SCN8A, WE HOST MEETUPS WEEKLY (WITH 4 LANGUAGE GROUPS) TO DISCUSS WHAT WE ARE LEARNING FROM OUR REGISTRY AND HEAR FROM FAMILIES. ACROSS THE DEVELOPMENT AND EPILEPTIC ENCEPHALOPATHIES, VIA OUR DEE?P CONNECTIONS PROJECT, WE HAVE HOSTED MORE THAN 70 INTERACTIVE WEBINARS SINCE 2020 TO BRING CRITICAL INFORMATION AND RESOURCES TO DEE CAREGIVERS.
IRS990/ProgSrvcAccomActy3Grp/Desc0ADVOCACY ? 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 EFFORT INCLUDED A SUBMISSION OF DATA AND FAMILY STORIES FOR THE FDA TO PROVIDE REQUIRED CONTEXT ABOUT SCN8A PATIENT PERSPECTIVES, PRIORITIES, AND LIVED EXPERIENCES. ANOTHER WAS SUBSTANTIVE FEEDBACK ON FDA DRAFT GUIDANCE ON CLINICAL OUTCOME ASSESSMENTS. BOTH SUBMISSIONS WERE WELL RECEIVED.
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IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt01619270
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IRS990/ScheduleBRequiredInd0true
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IRS990ScheduleD/OtherLiabilitiesOrgGrp/Desc0Credit Card
IRS990ScheduleD/TotalLiabilityAmt05206
IRS990ScheduleI/GrantRecordsMaintainedInd0false
IRS990ScheduleI/RecipientTable/CashGrantAmt05900
IRS990ScheduleI/RecipientTable/NonCashAssistanceAmt00
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt0Tremendous Inc
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt0228 Park Ave S
IRS990ScheduleI/RecipientTable/USAddress/CityNm0New York
IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd0NY
IRS990ScheduleI/RecipientTable/USAddress/ZIPCd010003
IRS990ScheduleI/Total501c3OrgCnt00
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IRS990/ScheduleORequiredInd0true
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0FORM 990 WILL BE REVIEWED BY THE EXTERNAL ACCOUNTING CFO AND THE ORGANIZATION?S BOARD OF DIRECTORS AND MANAGEMENT TEAM BEFORE E?FILING.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1No documents available to the public.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt2Change in Restricted Net Assets = -$55862
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0Form 990, Part VI, Section B, Line 11b
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1Form 990, Part VI, Section C, Line 19
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc2Form 990, Part XI, Line 9
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IRS990/TaxablePartyNotificationInd0false
IRS990/TaxExemptBondsInd0false
IRS990/TerminateOperationsInd0false
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IRS990/TotalAssetsGrp/EOYAmt0689190
IRS990/TotalCompGreaterThan150KInd0false
IRS990/TotalContributionsAmt0585540
IRS990/TotalEmployeeCnt05
IRS990/TotalFunctionalExpensesGrp/FundraisingAmt018516

Document Assets

No mirrored PDF or thumbnail assets are attached yet.

Filings

Displayed year

2023 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$689,190
Liabilities
$17,891
Net assets
$671,299
Revenue
$586,220
Expenses
$310,707
Net income
$275,513
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Facts available. Structured filing facts are available, but richer extracted sections are limited.$1.09$0.01$1.08$0.90$0.50$0.41
2023Detailed filing. Detailed filing data is available for this year.$0.69$0.02$0.67$0.59$0.31$0.28
2022Detailed filing. Detailed filing data is available for this year.$0.45$0.00$0.45$0.63$0.26$0.37
2021Detailed filing. Detailed filing data is available for this year.$0.20$0.02$0.18$0.33$0.22$0.11
2020Detailed filing. Detailed filing data is available for this year.$0.07$0.00$0.07$0.07$0.02$0.05