Civic Intelligence

International Foundation for Cdkl5 Research

EIN 27-0950477 • 501(c)3 • Wadsworth, OH

Profile

To fund research aimed at finding a cure for CDKL5, a rare genetic disorder. A family conference is funded by the Organization every two years to provide support to families whose loved ones suffer from CDKL5.

P O Box 926Wadsworth, OH 44282

www.cdkl5.com

Siviq Scores

Precomputed percentiles relative to similar nonprofits. These scores are descriptive rather than judgmental.

Liabilities / Assets

49th percentile

0.01x

Higher debt load relative to assets than 49% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Source year 2024

Liabilities / Revenue

52nd percentile

0.02x

Higher debt load relative to revenue than 52% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Source year 2024

Net Margin

90th percentile

50%

Higher net margin than 90% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Source year 2024

Top Officer Pay

55th percentile

$0

Higher top officer pay than 55% of similar nonprofits.

Top officer pay equals 0.0% of source-year revenue.

501(c)3 • $500k-$1M nonprofits • Source year 2024

Asset Growth

81st percentile

28%

Faster asset growth than 81% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Annualized from 2023 to 2024

Revenue Growth

58th percentile

12%

Faster revenue growth than 58% of similar nonprofits.

501(c)3 • $500k-$1M nonprofits • Annualized from 2023 to 2024

Balance Sheet
Liabilities / Assets49th percentile

Assets

Up

$976,798

Up $215,656 (+28%) from 2023

Liabilities

Down

$12,536

Down $183,655 (-94%) from 2023

Net Assets

Up

$964,262

Up $399,311 (+71%) from 2023

Operations
Liabilities / Revenue52nd percentileNet Margin90th percentile

Revenue

Up

$716,340

Up $77,158 (+12%) from 2023

Expenses

Down

$357,011

Down $57,587 (-14%) from 2023

Net Income

Up

$359,329

Up $134,745 (+60%) from 2023

Trend Graphs

Balance Sheet Trend

Asset Growth81st percentile

Grouped bars show assets, liabilities, and net assets across loaded filings.

$1.5M$1.0M$500K$0Assets 2010: $142,496Net Assets 2010: $142,4962010Assets 2011: $363,636Liabilities 2011: $0Net Assets 2011: $363,6362011Assets 2012: $532,481Liabilities 2012: $25,970Net Assets 2012: $506,5112012Assets 2013: $741,346Liabilities 2013: $83,290Net Assets 2013: $658,0562013Assets 2014: $1,182,785Liabilities 2014: $10,000Net Assets 2014: $1,172,7852014Assets 2015: $1,080,678Liabilities 2015: $0Net Assets 2015: $1,080,6782015Assets 2016: $806,546Liabilities 2016: $20,000Net Assets 2016: $786,5462016Assets 2017: $913,861Liabilities 2017: $29,924Net Assets 2017: $883,9372017Assets 2018: $649,889Liabilities 2018: $90,508Net Assets 2018: $559,3812018Assets 2019: $329,464Liabilities 2019: $3,280Net Assets 2019: $326,1842019Assets 2020: $415,038Liabilities 2020: $156,414Net Assets 2020: $258,6242020Assets 2021: $544,139Liabilities 2021: $107,751Net Assets 2021: $436,3882021Assets 2022: $631,046Liabilities 2022: $312,257Net Assets 2022: $318,7892022Assets 2023: $761,142Liabilities 2023: $196,191Net Assets 2023: $564,9512023Assets 2024: $976,798Liabilities 2024: $12,536Net Assets 2024: $964,2622024

Highlighted filing

2024

Assets$976,798
Liabilities$12,536
Net Assets$964,262
Open 2024 Filing

Operations Trend

Revenue Growth58th percentile

Revenue, expenses, and net income by year, with the latest filing highlighted.

$1.0M$500K$0-$500KRevenue 2010: $144,316Expenses 2010: $1,820Net Income 2010: $142,4962010Expenses 2011: $106,9162011Expenses 2012: $155,7582012Revenue 2013: $296,348Expenses 2013: $151,278Net Income 2013: $145,0702013Revenue 2014: $740,737Expenses 2014: $237,605Net Income 2014: $503,1322014Revenue 2015: $295,067Expenses 2015: $401,032Net Income 2015: -$105,9652015Revenue 2016: $431,749Expenses 2016: $730,686Net Income 2016: -$298,9372016Revenue 2017: $327,200Expenses 2017: $260,632Net Income 2017: $66,5682017Revenue 2018: $490,009Expenses 2018: $807,652Net Income 2018: -$317,6432018Revenue 2019: $462,544Expenses 2019: $720,098Net Income 2019: -$257,5542019Revenue 2020: $635,334Expenses 2020: $699,706Net Income 2020: -$64,3722020Revenue 2021: $678,047Expenses 2021: $487,865Net Income 2021: $190,1822021Revenue 2022: $606,589Expenses 2022: $725,710Net Income 2022: -$119,1212022Revenue 2023: $639,182Expenses 2023: $414,598Net Income 2023: $224,5842023Revenue 2024: $716,340Expenses 2024: $357,011Net Income 2024: $359,3292024

Highlighted filing

2024

Revenue$716,340
Expenses$357,011
Net Income$359,329
Open 2024 Filing

Filings

Most recent year

2024 • Form 990Facts available. Structured filing facts are available, but richer extracted sections are limited.

Open filing
Assets
$976,798
Liabilities
$12,536
Net assets
$964,262
Revenue
$716,340
Expenses
$357,011
Net income
$359,329
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2024Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.98$0.01$0.96$0.72$0.36$0.36
2023Detailed filing. Detailed filing data is available for this year.$0.76$0.20$0.56$0.64$0.41$0.22
2022Detailed filing. Detailed filing data is available for this year.$0.63$0.31$0.32$0.61$0.73$0.12
2021Detailed filing. Detailed filing data is available for this year.$0.54$0.11$0.44$0.68$0.49$0.19
2020Detailed filing. Detailed filing data is available for this year.$0.42$0.16$0.26$0.64$0.70$0.06
2019Detailed filing. Detailed filing data is available for this year.$0.33$0.00$0.33$0.46$0.72$0.26
2018Detailed filing. Detailed filing data is available for this year.$0.65$0.09$0.56$0.49$0.81$0.32
2017Detailed filing. Detailed filing data is available for this year.$0.91$0.03$0.88$0.33$0.26$0.07
2016Detailed filing. Detailed filing data is available for this year.$0.81$0.02$0.79$0.43$0.73$0.30
2015Detailed filing. Detailed filing data is available for this year.$1.08$0.00$1.08$0.30$0.40$0.11
2014Detailed filing. Detailed filing data is available for this year.$1.18$0.01$1.17$0.74$0.24$0.50
2013Detailed filing. Detailed filing data is available for this year.$0.74$0.08$0.66$0.30$0.15$0.15
2012Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.53$0.03$0.51$0.16
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.36$0.00$0.36$0.11
2010Facts available. Structured filing facts are available, but richer extracted sections are limited.$0.14$0.14$0.14$0.00$0.14
Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Oct 16, 2025
Return Version
2024v5.2
Gross Receipts
$718,028
Mission and Program Overview

Mission

To fund research aimed at finding

To fund research aimed at finding a cure for CDKL5, a rare genetic disorder. A family conference is funded by the Organization every two years to provide support to families whose loved ones suffer from CDKL5.

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$284,614$387,550▲ $102,936
Savings and Temporary Cash Investments$289,364$328,288▲ $38,924
Investments in Publicly Traded Securities$165,432$245,342▲ $79,910
Intangible Assets$18,333$11,000▼ $7,333
Prepaid Expenses and Deferred Charges$3,399$4,618▲ $1,219
Total Assets$761,142$976,798▲ $215,656
Liabilities
Accounts Payable and Accrued Expenses$1,432$7,200▲ $5,768
Grants Payable$194,759$5,336▼ $189,423
Total Liabilities$196,191$12,536▼ $183,655
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$564,951$964,262▲ $399,311
Total Net Assets Fund Balance$564,951$964,262▲ $399,311
Total Liabilities and Net Assets / Fund Balance$761,142$976,798▲ $215,656
Compensation and Service Providers
Top Officer Pay55th percentile

Board Members and Trustees

NameTitle
Karen UtleyPresident
Rick UppVice President
Melissa RalstonBoard Member Emeritus
Garrett DeckerDirector
Marissa BishopDirector
Miriam ChurginDirector
Paul MillerSecretary
Amanda JakshaTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$712,663
Program Service Revenue
$0
Investment Income
$3,677
Other Revenue
$0
All Other Contributions
$657,959
Change in Net Assets
$359,329

Noncash Contribution Practices

Property subject to holding requirements
No
Reviewed unusual noncash gifts
Yes
Third parties used for noncash contributions
No

Noncash Contributions

Contribution TypeContribution CountReported AmountValuation Method
Securities Publicly Traded2$42,544Fair Market Value
Total Noncash Contributions2$42,544-

Audited Revenue Reconciliation

Revenue per Audited Statements
$718,028
Revenue Not Reported on Financial Statements
$-1,688
Revenue Not Reported on Form 990
$35,588
Other Revenue Adjustments
$-1,688
Total Revenue per Audited Statements
$753,616
Total Revenue per Form 990
$716,340
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$236,496
Grants and Similar Amounts Paid$120,515
Total Fundraising Expense$3,341
Professional Fundraising Fees$0
Salaries, Compensation, and Employee Benefits$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
All Other Expenses$137,141$8,915$3,307$149,363
Grants to Domestic Orgs$120,515--$120,515
Fees for Services Other$50,999$5,667$0$56,666
Other Expenses$0$7,392$0$7,392
Depreciation Depletion$3,667$3,667$0$7,334
Insurance$0$2,942$0$2,942
Office Expenses$0$1,625$0$1,625
Fees for Services Accounting$0$1,624$0$1,624
Travel$1,170$0$0$1,170
Advertising$0$302$34$336
Total Functional Expenses$313,492$40,178$3,341$357,011

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$358,701
Expenses per Audited Statements$357,013
Total Expenses per Form 990$357,011
Expenses Not Reported on Form 990$1,688
Expenses Not Reported on Financial Statements$-2
Other Expense Adjustments$-2
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
University of OregonEugene, OR501 (c) (3)Research$55,874
Children's Hospital PhiladelphiaPhiladelphia, PA501 (c) (3)Research$50,000
Washington University School of MedicineSaint Louis, MO501 (c) (3)Research$30,000
Orphan Disease Center at University of PennsylvaniaPhiladelphia, PA501 (c) (3)Research$13,400
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Fundraising Direct Expenses$1,688
Fundraising Gross Income$1,688
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Vivis Drive$27,330$0$0$0
Toasting Tanner$17,457$1,688$1,688$0
Total Events$56,392$1,688$1,688$0
Political and Lobbying Activity
Political campaign activity
No
Lobbying activity
No
Subject to proxy tax
No
Governance and Compliance

Governance Checklist

Compiled or reviewed by an accountant
No
Annual disclosure for covered persons
Yes
Audit committee
Yes
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
No
Other officer compensation reviewed
No
Conflict-of-interest policy
Yes
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No
Filing and Contact Details

Filer

Filer Name
International Foundation For CDKL5 Research
EIN
27-0950477
Phone
9792653411
Address
P O Box 926, Wadsworth, OH 44282

Signing Officer

Name
Karen Utley
Title
President
Phone
9792653411
Signed
2025-10-16
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Karen Utley
Formed
2009
Legal Domicile
Oh
Voting Board Members
8
Independent Board Members
8
Employees
0
Volunteers
12

Preparer

Firm
Judy L Arfa CPA Pllc
Address
4265 SAN FELIPE 1100, HOUSTON, TX 77027
Preparer
Judy L Arfa CPA
Phone
7132403315
Supplemental Narrative

Additional Explanations

Pt VI, Line 11B

“The form is reviewed by the Board Treasurer and other”

Pt VI, Line 11B

“members of the Board. All questions are reviewed to make”

Pt VI, Line 11B

“certain that there are no incorrect answers.”

Pt VI, Line 12C

“Questionnaires are required to be completed by all”

Pt VI, Line 12C

“Board members annually. Should there be reasons for”

Pt VI, Line 12C

“concern, there is a detailed review of all”

Pt VI, Line 12C

“transactions that appear to be a cause for concern.”

Pt VI, Line 19

“Upon request, they are provided to grantors, contributors,”

Pt VI, Line 19

“and Board members.”

Form 990, Part IX, Line 24E

“Donor Management 17539. 12277. 4385. 877.”

Form 990, Part IX, Line 24E

“Family Conference 95197. 95197. 0. 0.”

Form 990, Part IX, Line 24E

“Family Support 29667. 29667. 0. 0.”

Form 990, Part IX, Line 24E

“Gifts 1685. 0. 0. 1685.”

Form 990, Part IX, Line 24E

“Printing 2980. 0. 2235. 745.”

Form 990, Part IX, Line 24E

“Supplies 2295. 0. 2295. 0.”

Financial Statement Notes

Pt XI, Line 4B

“Fundraising Expenses $1,688”

Pt XII, Line 2D

“Fundraising Expenses $1,688”

Pt XII, Line 4B

“Rounding -$2”

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This appendix keeps the raw XML leaves available for debugging and edge-case review. The human report above is the primary experience.

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IRS990/LocalChaptersInd0false
IRS990/MaterialDiversionOrMisuseInd0false
IRS990/MembersOrStockholdersInd0false
IRS990/MethodOfAccountingAccrualInd0X
IRS990/MinutesOfCommitteesInd0true
IRS990/MinutesOfGoverningBodyInd0true
IRS990/MissionDesc0To fund research aimed at finding a cure for CDKL5, a rare genetic disorder. A family conference is funded by the Organization every two years to provide support to families whose loved ones suffer from CDKL5.
IRS990/MoreThan5000KToIndividualsInd0false
IRS990/MoreThan5000KToOrgInd0false
IRS990/NetAssetsOrFundBalancesBOYAmt0564951
IRS990/NetAssetsOrFundBalancesEOYAmt0964262
IRS990/NetIncmFromFundraisingEvtGrp/ExclusionAmt00
IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt00
IRS990/NetIncmFromFundraisingEvtGrp/UnrelatedBusinessRevenueAmt00
IRS990/NetUnrelatedBusTxblIncmAmt00
IRS990/NetUnrlzdGainsLossesInvstAmt035588
IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt0564951
IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt0964262
IRS990/NoListedPersonsCompensatedInd0X
IRS990/NoncashContributionsAmt042544
IRS990/NondeductibleContributionsInd0false
IRS990/OfficeExpensesGrp/FundraisingAmt00
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt01625
IRS990/OfficeExpensesGrp/ProgramServicesAmt00
IRS990/OfficeExpensesGrp/TotalAmt01625
IRS990/OfficerMailingAddressInd0false
IRS990/OperateHospitalInd0false
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsFASB117Ind0X
IRS990/OtherExpensesGrp/Desc0Business Registration
IRS990/OtherExpensesGrp/Desc1Bank Charges
IRS990/OtherExpensesGrp/FundraisingAmt00
IRS990/OtherExpensesGrp/FundraisingAmt10
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt08044
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt17392
IRS990/OtherExpensesGrp/ProgramServicesAmt00
IRS990/OtherExpensesGrp/ProgramServicesAmt10
IRS990/OtherExpensesGrp/TotalAmt08044
IRS990/OtherExpensesGrp/TotalAmt17392
IRS990/OwnWebsiteInd0X
IRS990/PartialLiquidationInd0false
IRS990/PayPremiumsPrsnlBnftCntrctInd0false
IRS990/PoliticalCampaignActyInd0false
IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt03399
IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt04618
IRS990/PrincipalOfficerNm0Karen Utley
IRS990/PriorPeriodAdjustmentsAmt04394
IRS990/ProfessionalFundraisingInd0false
IRS990/ProhibitedTaxShelterTransInd0false
IRS990/PYContributionsGrantsAmt0630788
IRS990/PYExcessBenefitTransInd0false
IRS990/PYGrantsAndSimilarPaidAmt0197884
IRS990/PYInvestmentIncomeAmt03044
IRS990/PYOtherExpensesAmt0216714
IRS990/PYOtherRevenueAmt05350
IRS990/PYRevenuesLessExpensesAmt0224584
IRS990/PYTotalExpensesAmt0414598
IRS990/PYTotalRevenueAmt0639182
IRS990/QuidProQuoContributionsInd0false
IRS990/RcvFndsToPayPrsnlBnftCntrctInd0false
IRS990/ReconcilationRevenueExpnssAmt0359329
IRS990/RegularMonitoringEnfrcInd0true
IRS990/RelatedEntityInd0false
IRS990/RelatedOrganizationCtrlEntInd0false
IRS990/ReportInvestmentsOtherSecInd0false
IRS990/ReportLandBuildingEquipmentInd0false
IRS990/ReportOtherAssetsInd0false
IRS990/ReportOtherLiabilitiesInd0false
IRS990/ReportProgramRelatedInvstInd0false
IRS990/RevenueAmt00
IRS990/SavingsAndTempCashInvstGrp/BOYAmt0289364
IRS990/SavingsAndTempCashInvstGrp/EOYAmt0328288
IRS990ScheduleA/Form990ScheduleAPartVIGrp/ExplanationTxt0Other Income Part II, Line 10 Description: Sales of Merchandise Description: Cost of Goods Sold Description: Miscellaneous Revenue 2023: 5350. Description: Family Conference Income 2020: 92500. Description: Refunds 2020: 35989. 2021: 9962.
IRS990ScheduleA/Form990ScheduleAPartVIGrp/FormAndLineReferenceDesc0Pt II Ln 10
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt0712663
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt0630788
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt0606015
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt0668072
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt0505914
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt03123452
IRS990ScheduleA/GovtFurnSrvcFcltsVl170Grp/TotalAmt00
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearAmt03677
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus1YearAmt03044
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus2YearsAmt0574
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus3YearsAmt013
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus4YearsAmt0931
IRS990ScheduleA/GrossInvestmentIncome170Grp/TotalAmt08239
IRS990ScheduleA/GrossReceiptsRltdActivitiesAmt092500
IRS990ScheduleA/InvestmentIncomeCYPct00
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus1YearAmt05350
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus3YearsAmt09962
IRS990ScheduleA/OtherIncome170Grp/CurrentTaxYearMinus4YearsAmt0128489
IRS990ScheduleA/OtherIncome170Grp/TotalAmt0143801
IRS990ScheduleA/OtherSupportSumAmt00
IRS990ScheduleA/PublicOrganization170Ind0X
IRS990ScheduleA/PublicSupportCY170Pct00.79880
IRS990ScheduleA/PublicSupportCY509Pct00
IRS990ScheduleA/PublicSupportPY170Pct00.78480
IRS990ScheduleA/PublicSupportTotal170Amt02616455
IRS990ScheduleA/PublicSupportTotal509Amt00
IRS990ScheduleA/SubstantialContributorsTotAmt0506997
IRS990ScheduleA/TaxRevLeviedOrgnztnlBnft170Grp/TotalAmt00
IRS990ScheduleA/ThirtyThrPctSuprtTestsCY170Ind0X
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt0712663
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt0630788
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt0606015
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt0668072
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt0505914
IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt03123452
IRS990ScheduleA/TotalSupportAmt03275492
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/TotalAmt00
IRS990ScheduleB/ContributorInformationGrp/ContributorBusinessName/BusinessNameLine10RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorNum0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine10RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/AddressLine20RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/City0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/State0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/ContributorUSAddress/ZIPCode0RESTRICTED
IRS990ScheduleB/ContributorInformationGrp/TotalContributionsAmt0RESTRICTED
IRS990/ScheduleBRequiredInd0true
IRS990ScheduleD/ExpensesNotReportedAmt01688
IRS990ScheduleD/ExpensesNotRptFinclStmtAmt0-2
IRS990ScheduleD/ExpensesSubtotalAmt0357013
IRS990ScheduleD/NetUnrealizedGainsInvstAmt035588
IRS990ScheduleD/OtherExpensesIncludedAmt01688
IRS990ScheduleD/OtherExpensesNotIncludedAmt0-2
IRS990ScheduleD/OtherRevenuesNotIncludedAmt0-1688
IRS990ScheduleD/RevenueNotReportedAmt035588
IRS990ScheduleD/RevenueNotReportedFinclStmtAmt0-1688
IRS990ScheduleD/RevenueSubtotalAmt0718028
IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt0Fundraising Expenses $1,688
IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt1Fundraising Expenses $1,688
IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt2Rounding -$2
IRS990ScheduleD/SupplementalInformationDetail/FormAndLineReferenceDesc0Pt XI, Line 4b
IRS990ScheduleD/SupplementalInformationDetail/FormAndLineReferenceDesc1Pt XII, Line 2d
IRS990ScheduleD/SupplementalInformationDetail/FormAndLineReferenceDesc2Pt XII, Line 4b
IRS990ScheduleD/TotalExpensesPerForm990Amt0357011
IRS990ScheduleD/TotalRevenuePerForm990Amt0716340
IRS990ScheduleD/TotalRevEtcAuditedFinclStmtAmt0753616
IRS990ScheduleD/TotExpnsEtcAuditedFinclStmtAmt0358701
IRS990ScheduleG/FundraisingEventInformationGrp/CharitableContributionsTotAmt054704
IRS990ScheduleG/FundraisingEventInformationGrp/CharitableContriEvent1Amt015769
IRS990ScheduleG/FundraisingEventInformationGrp/CharitableContriEvent2Amt027330
IRS990ScheduleG/FundraisingEventInformationGrp/CharitableContriOtherEventsAmt011605
IRS990ScheduleG/FundraisingEventInformationGrp/DirectExpenseSummaryEventsAmt01688
IRS990ScheduleG/FundraisingEventInformationGrp/Event1Nm0Toasting Tanner
IRS990ScheduleG/FundraisingEventInformationGrp/Event2Nm0Vivis Drive
IRS990ScheduleG/FundraisingEventInformationGrp/GrossReceiptsEvent1Amt017457
IRS990ScheduleG/FundraisingEventInformationGrp/GrossReceiptsEvent2Amt027330
IRS990ScheduleG/FundraisingEventInformationGrp/GrossReceiptsOtherEventsAmt011605
IRS990ScheduleG/FundraisingEventInformationGrp/GrossReceiptsTotalAmt056392
IRS990ScheduleG/FundraisingEventInformationGrp/GrossRevenueEvent1Amt01688
IRS990ScheduleG/FundraisingEventInformationGrp/GrossRevenueEvent2Amt00
IRS990ScheduleG/FundraisingEventInformationGrp/GrossRevenueOtherEventsAmt00
IRS990ScheduleG/FundraisingEventInformationGrp/GrossRevenueTotalEventsAmt01688
IRS990ScheduleG/FundraisingEventInformationGrp/NetIncomeSummaryAmt00
IRS990ScheduleG/FundraisingEventInformationGrp/OthDirectExpnssTotalEventsAmt01688
IRS990ScheduleG/FundraisingEventInformationGrp/OtherDirectExpensesEvent1Amt01688
IRS990ScheduleG/FundraisingEventInformationGrp/OtherDirectExpensesEvent2Amt00
IRS990ScheduleG/FundraisingEventInformationGrp/OtherEventsTotalCnt01
IRS990ScheduleI/GrantRecordsMaintainedInd0true
IRS990ScheduleI/RecipientTable/CashGrantAmt050000
IRS990ScheduleI/RecipientTable/CashGrantAmt130000
IRS990ScheduleI/RecipientTable/CashGrantAmt255874
IRS990ScheduleI/RecipientTable/CashGrantAmt313400
IRS990ScheduleI/RecipientTable/IRCSectionDesc0501 (c) (3)
IRS990ScheduleI/RecipientTable/IRCSectionDesc1501 (c) (3)
IRS990ScheduleI/RecipientTable/IRCSectionDesc2501 (c) (3)
IRS990ScheduleI/RecipientTable/IRCSectionDesc3501 (c) (3)
IRS990ScheduleI/RecipientTable/NonCashAssistanceAmt00
IRS990ScheduleI/RecipientTable/NonCashAssistanceAmt10
IRS990ScheduleI/RecipientTable/NonCashAssistanceAmt20
IRS990ScheduleI/RecipientTable/NonCashAssistanceAmt30
IRS990ScheduleI/RecipientTable/NonCashAssistanceDesc0N/A
IRS990ScheduleI/RecipientTable/NonCashAssistanceDesc1N/A
IRS990ScheduleI/RecipientTable/NonCashAssistanceDesc2N/A
IRS990ScheduleI/RecipientTable/NonCashAssistanceDesc3N/A
IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt0Research
IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt1Research
IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt2Research
IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt3Research
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt0Children's Hospital Philadelphia
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt1Washington University School of Medicine
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt2University of Oregon
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt3Orphan Disease Center at University of Pennsylvania
IRS990ScheduleI/RecipientTable/RecipientEIN0231352166
IRS990ScheduleI/RecipientTable/RecipientEIN1430653611
IRS990ScheduleI/RecipientTable/RecipientEIN2936015767
IRS990ScheduleI/RecipientTable/RecipientEIN3231352685
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt03401 Civic Center Blvd
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt1660 S Euclid Avenue
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt21585 E 13th Avenue
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt3125 South 31st Street
IRS990ScheduleI/RecipientTable/USAddress/CityNm0Philadelphia
IRS990ScheduleI/RecipientTable/USAddress/CityNm1Saint Louis
IRS990ScheduleI/RecipientTable/USAddress/CityNm2Eugene
IRS990ScheduleI/RecipientTable/USAddress/CityNm3Philadelphia
IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd0PA
IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd1MO
IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd2OR
IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd3PA
IRS990ScheduleI/RecipientTable/USAddress/ZIPCd019104
IRS990ScheduleI/RecipientTable/USAddress/ZIPCd163110
IRS990ScheduleI/RecipientTable/USAddress/ZIPCd297403
IRS990ScheduleI/RecipientTable/USAddress/ZIPCd319104
IRS990ScheduleI/RecipientTable/ValuationMethodUsedDesc0N/A
IRS990ScheduleI/RecipientTable/ValuationMethodUsedDesc1N/A
IRS990ScheduleI/RecipientTable/ValuationMethodUsedDesc2N/A
IRS990ScheduleI/RecipientTable/ValuationMethodUsedDesc3N/A
IRS990ScheduleI/SupplementalInformationDetail/ExplanationTxt0A group of officers monitors how these funds are being used on a
IRS990ScheduleI/SupplementalInformationDetail/ExplanationTxt1frequent basis.

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