Civic Intelligence

Association of Creatine Deficiencies

EIN 46-2133007 • 501(c)3 • Carlsbad, CA

Profile

To promote and fund medial research for treatments and cures, provide patient, family, and public education, and advocate for early intervention through newborn screening for Cerebral Creatine Deficiency Syndromes (CCDS).

6965 El Camino Real 105-598Carlsbad, CA 92009

www.creatineinfo.org

Siviq Scores

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

Liabilities / Assets

71st percentile

0.02x

Higher debt load relative to assets than 71% of similar nonprofits.

501(c)3 • <$500k nonprofits • Source year 2024

Liabilities / Revenue

74th percentile

0.03x

Higher debt load relative to revenue than 74% of similar nonprofits.

501(c)3 • <$500k nonprofits • Source year 2024

Net Margin

13th percentile

-59%

Higher net margin than 13% of similar nonprofits.

501(c)3 • <$500k nonprofits • Source year 2024

Top Officer Pay

84th percentile

$0

Higher top officer pay than 84% of similar nonprofits.

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

501(c)3 • <$500k nonprofits • Source year 2018

Asset Growth

21st percentile

-38%

Faster asset growth than 21% of similar nonprofits.

501(c)3 • <$500k nonprofits • Annualized from 2023 to 2024

Revenue Growth

25th percentile

-30%

Faster revenue growth than 25% of similar nonprofits.

501(c)3 • <$500k nonprofits • Annualized from 2023 to 2024

Assets

Down

$418,617

Down $256,062 (-38%) from 2023

Liabilities

Down

$10,372

Down $16,350 (-61%) from 2023

Net Assets

Down

$408,245

Down $239,712 (-37%) from 2023

Revenue

Down

$411,288

Down $176,904 (-30%) from 2023

Expenses

Up

$653,844

Up $51,231 (+8.5%) from 2023

Net Income

Down

-$242,556

Down $228,135 (-1582%) from 2023

Trend Graphs

Balance Sheet Trend

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

$800K$600K$400K$200K$0Assets 2015: $50,178Net Assets 2015: $50,1782015Assets 2016: $70,095Net Assets 2016: $70,0952016Assets 2017: $122,042Net Assets 2017: $122,0422017Assets 2018: $123,591Net Assets 2018: $123,5912018Assets 2019: $165,371Liabilities 2019: $1,603Net Assets 2019: $163,7682019Assets 2020: $714,167Liabilities 2020: $7,734Net Assets 2020: $706,4332020Assets 2021: $574,512Liabilities 2021: $9,615Net Assets 2021: $564,8972021Assets 2022: $685,374Liabilities 2022: $25,423Net Assets 2022: $659,9512022Assets 2023: $674,679Liabilities 2023: $26,722Net Assets 2023: $647,9572023Assets 2024: $418,617Liabilities 2024: $10,372Net Assets 2024: $408,2452024

Highlighted filing

2024

Assets$418,617
Liabilities$10,372
Net Assets$408,245

Operations Trend

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

$1.0M$500K$0-$500KRevenue 2015: $49,160Expenses 2015: $22,676Net Income 2015: $26,4842015Revenue 2016: $57,312Expenses 2016: $37,395Net Income 2016: $19,9172016Revenue 2017: $97,055Expenses 2017: $45,108Net Income 2017: $51,9472017Revenue 2018: $145,080Expenses 2018: $143,531Net Income 2018: $1,5492018Revenue 2019: $128,625Expenses 2019: $88,448Net Income 2019: $40,1772019Revenue 2020: $638,614Expenses 2020: $95,949Net Income 2020: $542,6652020Revenue 2021: $322,273Expenses 2021: $474,054Net Income 2021: -$151,7812021Revenue 2022: $699,129Expenses 2022: $599,640Net Income 2022: $99,4892022Revenue 2023: $588,192Expenses 2023: $602,613Net Income 2023: -$14,4212023Revenue 2024: $411,288Expenses 2024: $653,844Net Income 2024: -$242,5562024

Highlighted filing

2024

Revenue$411,288
Expenses$653,844
Net Income-$242,556

Filings

Latest Filing Detail
Jump To
Filing Snapshot
Filing Period
Jan 1, 2024 to Dec 31, 2024
Signed
Nov 13, 2025
Return Version
2024v5.2
Gross Receipts
$411,288
Mission and Program Overview

Mission

The corporation is a charitable corporation as defined in n.c. Gen. Stat. 55a-1-40(4) and is organized exclusively for one or more of the purposes specified in section 501(c)(3) of the internal revenue code of 1986 (or the corresponding provision of any future united states internal revenue law), including but not limited to improving the diagnosis,

To promote and fund medial research for treatments and cures, provide patient, family, and public education, and advocate for early intervention through newborn screening for Cerebral Creatine Deficiency Syndromes (CCDS).

Balance Sheet Detail
LineBeginningEndChange
Assets
Cash and Non-Interest-Bearing Accounts$385,706$243,608▼ $142,098
Investments in Publicly Traded Securities$69,685$77,237▲ $7,552
Land, Buildings, and Equipment, Net$67,905$45,270▼ $22,635
Pledges and Grants Receivable$148,265$33,625▼ $114,640
Prepaid Expenses and Deferred Charges$3,118$18,877▲ $15,759
Total Assets$674,679$418,617▼ $256,062
Liabilities
Accounts Payable and Accrued Expenses$26,722$10,372▼ $16,350
Total Liabilities$26,722$10,372▼ $16,350
Net Assets / Fund Balance
Net Assets Without Donor Restrictions$480,600$395,420▼ $85,180
Net Assets With Donor Restrictions$167,357$12,825▼ $154,532
Total Net Assets Fund Balance$647,957$408,245▼ $239,712
Total Liabilities and Net Assets / Fund Balance$674,679$418,617▼ $256,062

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$45,270$22,635$67,905
Compensation and Service Providers

Employees

NameTitleFull / Part TimeBaseTotal
Heidi WallisExecutive DirectorFT$109,716$109,716

Board Members and Trustees

NameTitle
Daniel CollerBoard Chair
Randy AllenVice Chair
Kim TuminelloDirector of Advocacy
Erin CollerDirector of Comm
Mikelle LawDirector of Compliance
Celeste GrahamDirector of Education
Revenue and Support

Revenue Composition

Contributions and Grants
$353,871
Program Service Revenue
$47,133
Investment Income
$4,708
Other Revenue
$5,576
All Other Contributions
$235,105
Change in Net Assets
$-242,556

Audited Revenue Reconciliation

Revenue per Audited Statements
$411,288
Revenue Not Reported on Form 990
$27,437
Total Revenue per Audited Statements
$438,725
Total Revenue per Form 990
$411,288
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$276,759
Grants and Similar Amounts Paid$215,440
Salaries, Compensation, and Employee Benefits$161,645
Total Fundraising Expense$41,738
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Grants to Domestic Orgs$117,440--$117,440
Current Officers, Directors, Trustees, and Key Employees$77,072$19,825$12,819$109,716
Foreign Grants$97,500--$97,500
Conferences and Meetings$94,251$152-$94,403
Fees for Services Other$62,395$11,659$4,692$78,746
Other Salaries and Wages$28,156$7,242$4,683$40,081
Fees for Services Accounting-$27,246-$27,246
Depreciation Depletion$22,635--$22,635
Office Expenses$10,051$1,714$5,299$17,064
Advertising$603$1,983$12,168$14,754
Travel$12,560--$12,560
Payroll Taxes$8,141$2,040$1,390$11,571
Information Technology$1,502$2,264$542$4,308
Insurance$132$1,918-$2,050
Other Expenses$1,603--$1,603
Occupancy$989$63$88$1,140
Grants to Domestic Individuals$500--$500
Other Employee Benefits$176$44$57$277
Fees for Services Legal-$250-$250
Total Functional Expenses$535,706$76,400$41,738$653,844

Audited Expense Reconciliation

Line ItemAmount
Total Expenses per Audited Statements$678,437
Expenses per Audited Statements$653,844
Total Expenses per Form 990$653,844
Expenses Not Reported on Form 990$24,593
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
University of UtahSalt Lake City, UT501c3-$72,440
UclaLos Angeles, CA501c3-$30,000
University of Central FloridaOrlando, FL501c3-$15,000

International Summary

Spending
$97,500

International Compliance

Foreign grant records maintained
Yes
Activity in boycott countries
No
Foreign corporation ownership
No
Foreign partnership interest
No
Interest in foreign trust
No
Passive foreign investment company interest
No
Transfers to foreign corporations
No

International Activities

RegionActivityServicesOfficesEmployeesSpending
Europe including Iceland and GreenlandProgram servicesResearch--$60,000
North America Not the United StatesProgram servicesResearch--$37,500
Fundraising, Events, and Gaming
Fundraising activities
Yes
Gaming activities
No
Professional fundraiser used
No

Fundraising and Gaming Totals

Line ItemAmount
Professional Fundraising Fees$0

Fundraising Events

EventGross ReceiptsGross RevenueDirect ExpensesNet Income
Special Even$118,766---
Total Events$118,766---
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
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
No
Audited financial statements prepared
No
Key decisions subject to board approval
No
Management duties delegated
No

Governance Explanations

Officer directors etc family relationship Part VI line 2

Erin Coller and Daniel Coller are married.

Form 990 governing body review Part VI line 11

The IRS Form 990 is provided to all board members prior to filing.

Governing documents etc available to public Part VI line 19

These documents are available upon request.

Filing and Contact Details

Filer

Filer Name
Association for Creatine Deficiencies
EIN
46-2133007
In Care Of
% Daniel Coller
Phone
6019422373
Address
6965 El Camino Real 105-598, Carlsbad, CA 92009

Signing Officer

Name
Daniel Coller
Title
Board Chair
Phone
6019422373
Signed
2025-11-13
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Daniel Coller
Formed
2012
Legal Domicile
CA
Voting Board Members
6
Independent Board Members
6
Employees
2
Volunteers
7

Preparer

Firm
Mullins PC
Address
7625 Wisconsin Avenue, Bethesda, MD 20814
Preparer
John Mullins
Phone
2027706371
Supplemental Narrative

Additional Explanations

List of other fees for services expenses Part IX line 11G

Other Professional Fees $76,482Service Fees: $2,155Board Expenses: $109

Financial Statement Notes

Part X, Line 2-Text in footnote regarding FIN 48 (ASC 740)

The Association is a tax-exempt entity under Code Section 501(c)(3) of the Internal Revenue Code (the Code), and are exempt from federal income taxes on related income pursuant to Section 501(a) of the Code and is not considered to be a private foundation. In addition, the Association is subject to income tax on net income that is derived from business activities that are unrelated to their exempt purposes. Management has determined that the entity is not subject to unrelated business income tax and has not filed an Exempt Organization Business Income Tax Return (Form 990-T) with the IRS. Accordingly, no provision for income taxes is included in the financial statements. The Association has filed all of its known and required tax returns in a timely manner, including as permitted, allowed extensions.

Raw XML AppendixShowing 400 of 507 raw XML fields

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

Path#Value
IRS990/AccountantCompileOrReviewInd0false
IRS990/AccountsPayableAccrExpnssGrp/BOYAmt026722
IRS990/AccountsPayableAccrExpnssGrp/EOYAmt010372
IRS990/ActivitiesConductedPrtshpInd0false
IRS990/ActivityOrMissionDesc0To promote and fund medial research for treatments and cures, provide patient, family, and public education, and advocate for early intervention through newborn screening for Cerebral Creatine Deficiency Syndromes (CCDS).
IRS990/AdvertisingGrp/FundraisingAmt012168
IRS990/AdvertisingGrp/ManagementAndGeneralAmt01983
IRS990/AdvertisingGrp/ProgramServicesAmt0603
IRS990/AdvertisingGrp/TotalAmt014754
IRS990/AllOtherContributionsAmt0235105
IRS990/AuditCommitteeInd0true
IRS990/BackupWthldComplianceInd0true
IRS990/BooksInCareOfDetail/PersonNm0The Organization
IRS990/BooksInCareOfDetail/PhoneNum06019422373
IRS990/BooksInCareOfDetail/USAddress/AddressLine1Txt06965 El Camino Real 105-598
IRS990/BooksInCareOfDetail/USAddress/CityNm0Carlsbad
IRS990/BooksInCareOfDetail/USAddress/StateAbbreviationCd0CA
IRS990/BooksInCareOfDetail/USAddress/ZIPCd092009
IRS990/BusinessRlnWith35CtrlEntInd0false
IRS990/BusinessRlnWithFamMemInd0false
IRS990/BusinessRlnWithOrgMemInd0false
IRS990/CashNonInterestBearingGrp/BOYAmt0385706
IRS990/CashNonInterestBearingGrp/EOYAmt0243608
IRS990/ChangeToOrgDocumentsInd0false
IRS990/CollectionsOfArtInd0false
IRS990/CompCurrentOfcrDirectorsGrp/FundraisingAmt012819
IRS990/CompCurrentOfcrDirectorsGrp/ManagementAndGeneralAmt019825
IRS990/CompCurrentOfcrDirectorsGrp/ProgramServicesAmt077072
IRS990/CompCurrentOfcrDirectorsGrp/TotalAmt0109716
IRS990/CompensationFromOtherSrcsInd0false
IRS990/CompensationProcessCEOInd0false
IRS990/CompensationProcessOtherInd0false
IRS990/ConferencesMeetingsGrp/ManagementAndGeneralAmt0152
IRS990/ConferencesMeetingsGrp/ProgramServicesAmt094251
IRS990/ConferencesMeetingsGrp/TotalAmt094403
IRS990/ConflictOfInterestPolicyInd0false
IRS990/ConservationEasementsInd0false
IRS990/ConsolidatedAuditFinclStmtInd0false
IRS990/ContriRptFundraisingEventAmt0118766
IRS990/CreditCounselingInd0false
IRS990/CYBenefitsPaidToMembersAmt00
IRS990/CYContributionsGrantsAmt0353871
IRS990/CYGrantsAndSimilarPaidAmt0215440
IRS990/CYInvestmentIncomeAmt04708
IRS990/CYOtherExpensesAmt0276759
IRS990/CYOtherRevenueAmt05576
IRS990/CYProgramServiceRevenueAmt047133
IRS990/CYRevenuesLessExpensesAmt0-242556
IRS990/CYSalariesCompEmpBnftPaidAmt0161645
IRS990/CYTotalExpensesAmt0653844
IRS990/CYTotalFundraisingExpenseAmt041738
IRS990/CYTotalProfFndrsngExpnsAmt00
IRS990/CYTotalRevenueAmt0411288
IRS990/DecisionsSubjectToApprovaInd0false
IRS990/DeductibleArtContributionInd0false
IRS990/DeductibleNonCashContriInd0false
IRS990/DelegationOfMgmtDutiesInd0false
IRS990/DepreciationDepletionGrp/ProgramServicesAmt022635
IRS990/DepreciationDepletionGrp/TotalAmt022635
IRS990/Desc0Providing accurate and up to date information through attendance at Medical & Scientific conferences, maintaining informational website, hosting CCDS conference and distributing recordings of talks to accelerate knowledge of creatine deficiencies and related research. Advocating for increased adoption of newborn screening. Supporting CCDS caregivers with webinars, opportunities to engage with researchers, and a structured virtual support group. Supporting research through fellowship grants and maintenance of a patient registry and natural history platform. Co-supporting research and patient communities through joint webinars, quarterly newsletters, online resources, etc.
IRS990/DescribedInSection501c3Ind0true
IRS990/DisregardedEntityInd0false
IRS990/DocumentRetentionPolicyInd0false
IRS990/DonorAdvisedFundInd0false
IRS990/DonorRestrictionNetAssetsGrp/BOYAmt0167357
IRS990/DonorRestrictionNetAssetsGrp/EOYAmt012825
IRS990/DonorRstrOrQuasiEndowmentsInd0false
IRS990/ElectionOfBoardMembersInd0false
IRS990/EmployeeCnt02
IRS990/EmploymentTaxReturnsFiledInd0true
IRS990/EngagedInExcessBenefitTransInd0false
IRS990/ExpenseAmt0535706
IRS990/FamilyOrBusinessRlnInd0false
IRS990/FederalGrantAuditRequiredInd0false
IRS990/FeesForServicesAccountingGrp/ManagementAndGeneralAmt027246
IRS990/FeesForServicesAccountingGrp/TotalAmt027246
IRS990/FeesForServicesLegalGrp/ManagementAndGeneralAmt0250
IRS990/FeesForServicesLegalGrp/TotalAmt0250
IRS990/FeesForServicesOtherGrp/FundraisingAmt04692
IRS990/FeesForServicesOtherGrp/ManagementAndGeneralAmt011659
IRS990/FeesForServicesOtherGrp/ProgramServicesAmt062395
IRS990/FeesForServicesOtherGrp/TotalAmt078746
IRS990/ForeignActivitiesInd0true
IRS990/ForeignFinancialAccountInd0false
IRS990/ForeignGrantsGrp/ProgramServicesAmt097500
IRS990/ForeignGrantsGrp/TotalAmt097500
IRS990/ForeignOfficeInd0false
IRS990/Form8282PropertyDisposedOfInd0false
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt00.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt10.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt20.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt30.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt40.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt50.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRltdOrgRt60.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt040.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt110.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt210.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt310.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt410.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt55.00
IRS990/Form990PartVIISectionAGrp/AverageHoursPerWeekRt610.00
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd0X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd1X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd2X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd3X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd4X
IRS990/Form990PartVIISectionAGrp/IndividualTrusteeOrDirectorInd5X
IRS990/Form990PartVIISectionAGrp/OfficerInd0X
IRS990/Form990PartVIISectionAGrp/OfficerInd1X
IRS990/Form990PartVIISectionAGrp/OfficerInd2X
IRS990/Form990PartVIISectionAGrp/OfficerInd3X
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt00
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt10
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt20
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt30
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt40
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt50
IRS990/Form990PartVIISectionAGrp/OtherCompensationAmt60
IRS990/Form990PartVIISectionAGrp/PersonNm0Heidi Wallis
IRS990/Form990PartVIISectionAGrp/PersonNm1Erin Coller
IRS990/Form990PartVIISectionAGrp/PersonNm2Kim Tuminello
IRS990/Form990PartVIISectionAGrp/PersonNm3Mikelle Law
IRS990/Form990PartVIISectionAGrp/PersonNm4Daniel Coller
IRS990/Form990PartVIISectionAGrp/PersonNm5Celeste Graham
IRS990/Form990PartVIISectionAGrp/PersonNm6Randy Allen
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt0109716
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt10
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt20
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt30
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt40
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt50
IRS990/Form990PartVIISectionAGrp/ReportableCompFromOrgAmt60
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt00
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt10
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt20
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt30
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt40
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt50
IRS990/Form990PartVIISectionAGrp/ReportableCompFromRltdOrgAmt60
IRS990/Form990PartVIISectionAGrp/TitleTxt0Executive Director
IRS990/Form990PartVIISectionAGrp/TitleTxt1Director of Comm
IRS990/Form990PartVIISectionAGrp/TitleTxt2Director of Advocacy
IRS990/Form990PartVIISectionAGrp/TitleTxt3Director of Compliance
IRS990/Form990PartVIISectionAGrp/TitleTxt4Board Chair
IRS990/Form990PartVIISectionAGrp/TitleTxt5Director of Education
IRS990/Form990PartVIISectionAGrp/TitleTxt6Vice Chair
IRS990/Form990ProvidedToGvrnBodyInd0true
IRS990/FormationYr02012
IRS990/FormerOfcrEmployeesListedInd0false
IRS990/FSAuditedBasisGrp/SeparateBasisFinclStmtInd0X
IRS990/FSAuditedInd0true
IRS990/FundraisingActivitiesInd0true
IRS990/FundraisingAmt0118766
IRS990/GamingActivitiesInd0false
IRS990/GoverningBodyVotingMembersCnt06
IRS990/GrantAmt0215440
IRS990/GrantsToDomesticIndividualsGrp/ProgramServicesAmt0500
IRS990/GrantsToDomesticIndividualsGrp/TotalAmt0500
IRS990/GrantsToDomesticOrgsGrp/ProgramServicesAmt0117440
IRS990/GrantsToDomesticOrgsGrp/TotalAmt0117440
IRS990/GrantsToIndividualsInd0false
IRS990/GrantsToOrganizationsInd0true
IRS990/GrantToRelatedPersonInd0false
IRS990/GrossReceiptsAmt0411288
IRS990/GroupReturnForAffiliatesInd0false
IRS990/IncludeFIN48FootnoteInd0true
IRS990/IndependentAuditFinclStmtInd0true
IRS990/IndependentVotingMemberCnt06
IRS990/IndivRcvdGreaterThan100KCnt01
IRS990/IndoorTanningServicesInd0false
IRS990/InfoInScheduleOPartIXInd0X
IRS990/InfoInScheduleOPartVIInd0X
IRS990/InformationTechnologyGrp/FundraisingAmt0542
IRS990/InformationTechnologyGrp/ManagementAndGeneralAmt02264
IRS990/InformationTechnologyGrp/ProgramServicesAmt01502
IRS990/InformationTechnologyGrp/TotalAmt04308
IRS990/InsuranceGrp/ManagementAndGeneralAmt01918
IRS990/InsuranceGrp/ProgramServicesAmt0132
IRS990/InsuranceGrp/TotalAmt02050
IRS990/InvestmentIncomeGrp/ExclusionAmt04708
IRS990/InvestmentIncomeGrp/TotalRevenueColumnAmt04708
IRS990/InvestmentInJointVentureInd0false
IRS990/InvestmentsPubTradedSecGrp/BOYAmt069685
IRS990/InvestmentsPubTradedSecGrp/EOYAmt077237
IRS990/IRPDocumentCnt08
IRS990/IRPDocumentW2GCnt00
IRS990/LandBldgEquipAccumDeprecAmt022635
IRS990/LandBldgEquipBasisNetGrp/BOYAmt067905
IRS990/LandBldgEquipBasisNetGrp/EOYAmt045270
IRS990/LandBldgEquipCostOrOtherBssAmt067905
IRS990/LegalDomicileStateCd0CA
IRS990/LoanOutstandingInd0false
IRS990/LobbyingActivitiesInd0false
IRS990/LocalChaptersInd0false
IRS990/MaterialDiversionOrMisuseInd0false
IRS990/MembersOrStockholdersInd0false
IRS990/MethodOfAccountingAccrualInd0X
IRS990/MinutesOfCommitteesInd0true
IRS990/MinutesOfGoverningBodyInd0true
IRS990/MissionDesc0To promote and fund medial research for treatments and cures, provide patient, family, and public education, and advocate for early intervention through newborn screening for Cerebral Creatine Deficiency Syndromes (CCDS).
IRS990/MoreThan5000KToIndividualsInd0false
IRS990/MoreThan5000KToOrgInd0true
IRS990/NetAssetsOrFundBalancesBOYAmt0647957
IRS990/NetAssetsOrFundBalancesEOYAmt0408245
IRS990/NetIncmFromFundraisingEvtGrp/TotalRevenueColumnAmt00
IRS990/NetUnrelatedBusTxblIncmAmt00
IRS990/NetUnrlzdGainsLossesInvstAmt02844
IRS990/NoDonorRestrictionNetAssetsGrp/BOYAmt0480600
IRS990/NoDonorRestrictionNetAssetsGrp/EOYAmt0395420
IRS990/NondeductibleContributionsInd0false
IRS990/OccupancyGrp/FundraisingAmt088
IRS990/OccupancyGrp/ManagementAndGeneralAmt063
IRS990/OccupancyGrp/ProgramServicesAmt0989
IRS990/OccupancyGrp/TotalAmt01140
IRS990/OfficeExpensesGrp/FundraisingAmt05299
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt01714
IRS990/OfficeExpensesGrp/ProgramServicesAmt010051
IRS990/OfficeExpensesGrp/TotalAmt017064
IRS990/OfficerMailingAddressInd0false
IRS990/OperateHospitalInd0false
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsFASB117Ind0X
IRS990/OtherChangesInNetAssetsAmt00
IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt057
IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt044
IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt0176
IRS990/OtherEmployeeBenefitsGrp/TotalAmt0277
IRS990/OtherExpensesGrp/Desc0Other
IRS990/OtherExpensesGrp/ProgramServicesAmt01603
IRS990/OtherExpensesGrp/TotalAmt01603
IRS990/OtherRevenueMiscGrp/BusinessCd0900099
IRS990/OtherRevenueMiscGrp/Desc0Other
IRS990/OtherRevenueMiscGrp/RelatedOrExemptFuncIncomeAmt05576
IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt05576
IRS990/OtherRevenueTotalAmt05576
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt04683
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt07242
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt028156
IRS990/OtherSalariesAndWagesGrp/TotalAmt040081
IRS990/PartialLiquidationInd0false
IRS990/PayPremiumsPrsnlBnftCntrctInd0false
IRS990/PayrollTaxesGrp/FundraisingAmt01390
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt02040
IRS990/PayrollTaxesGrp/ProgramServicesAmt08141
IRS990/PayrollTaxesGrp/TotalAmt011571
IRS990/PledgesAndGrantsReceivableGrp/BOYAmt0148265
IRS990/PledgesAndGrantsReceivableGrp/EOYAmt033625
IRS990/PoliticalCampaignActyInd0false
IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt03118
IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt018877
IRS990/PrincipalOfficerNm0Daniel Coller
IRS990/ProfessionalFundraisingInd0false
IRS990/ProgramServiceRevenueGrp/BusinessCd0900099
IRS990/ProgramServiceRevenueGrp/Desc0Conference
IRS990/ProgramServiceRevenueGrp/RelatedOrExemptFuncIncomeAmt047133
IRS990/ProgramServiceRevenueGrp/TotalRevenueColumnAmt047133
IRS990/ProhibitedTaxShelterTransInd0false
IRS990/PYContributionsGrantsAmt0574134
IRS990/PYExcessBenefitTransInd0false
IRS990/PYGrantsAndSimilarPaidAmt0183000
IRS990/PYInvestmentIncomeAmt02487
IRS990/PYOtherExpensesAmt0268065
IRS990/PYOtherRevenueAmt06571
IRS990/PYProgramServiceRevenueAmt05000
IRS990/PYRevenuesLessExpensesAmt0-14421
IRS990/PYSalariesCompEmpBnftPaidAmt0151548
IRS990/PYTotalExpensesAmt0602613
IRS990/PYTotalRevenueAmt0588192
IRS990/QuidProQuoContributionsInd0true
IRS990/QuidProQuoContriDisclInd0true
IRS990/RcvFndsToPayPrsnlBnftCntrctInd0false
IRS990/ReconcilationRevenueExpnssAmt0-242556
IRS990/RelatedEntityInd0false
IRS990/RelatedOrganizationCtrlEntInd0false
IRS990/ReportInvestmentsOtherSecInd0false
IRS990/ReportLandBuildingEquipmentInd0true
IRS990/ReportOtherAssetsInd0false
IRS990/ReportOtherLiabilitiesInd0false
IRS990/ReportProgramRelatedInvstInd0false
IRS990/RevenueAmt047133
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearAmt0353871
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus1YearAmt0574134
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus2YearsAmt0664962
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus3YearsAmt0338742
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/CurrentTaxYearMinus4YearsAmt0657356
IRS990ScheduleA/GiftsGrantsContrisRcvd509Grp/TotalAmt02589065
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearAmt04708
IRS990ScheduleA/GrossInvestmentIncome509Grp/CurrentTaxYearMinus1YearAmt02487
IRS990ScheduleA/GrossInvestmentIncome509Grp/TotalAmt07195
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/CurrentTaxYearMinus4YearsAmt090
IRS990ScheduleA/GrossReceiptsAdmissionsGrp/TotalAmt090
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearAmt04708
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/CurrentTaxYearMinus1YearAmt02487
IRS990ScheduleA/InvestmentIncomeAndUBTIGrp/TotalAmt07195
IRS990ScheduleA/InvestmentIncomeCYPct00.00000
IRS990ScheduleA/InvestmentIncomePYPct00.00000
IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearAmt05576
IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearMinus1YearAmt06571
IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearMinus2YearsAmt021089
IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearMinus3YearsAmt01531
IRS990ScheduleA/OtherIncome509Grp/CurrentTaxYearMinus4YearsAmt02786
IRS990ScheduleA/OtherIncome509Grp/TotalAmt037553
IRS990ScheduleA/PubliclySupportedOrg509a2Ind0X
IRS990ScheduleA/PublicSupportCY509Pct00.98300
IRS990ScheduleA/PublicSupportPY509Pct00.98560
IRS990ScheduleA/PublicSupportTotal509Amt02589155
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearAmt00
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus1YearAmt00
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus2YearsAmt00
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus3YearsAmt00
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/CurrentTaxYearMinus4YearsAmt00
IRS990ScheduleA/SubstAndDsqlfyPrsnsTotGrp/TotalAmt00
IRS990ScheduleA/ThirtyThrPctSuprtTestsCY509Ind0X
IRS990ScheduleA/Total509Grp/CurrentTaxYearAmt0353871
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus1YearAmt0574134
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus2YearsAmt0664962
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus3YearsAmt0338742
IRS990ScheduleA/Total509Grp/CurrentTaxYearMinus4YearsAmt0657446
IRS990ScheduleA/Total509Grp/TotalAmt02589155
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearAmt0364155
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus1YearAmt0583192
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus2YearsAmt0686051
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus3YearsAmt0340273
IRS990ScheduleA/TotalSupportCalendarYearGrp/CurrentTaxYearMinus4YearsAmt0660232
IRS990ScheduleA/TotalSupportCalendarYearGrp/TotalAmt02633903
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/DonatedServicesAndUseFcltsAmt024593
IRS990ScheduleD/DonatedServicesUseFcltsAmt024593
IRS990ScheduleD/EquipmentGrp/BookValueAmt045270
IRS990ScheduleD/EquipmentGrp/DepreciationAmt022635
IRS990ScheduleD/EquipmentGrp/OtherCostOrOtherBasisAmt067905
IRS990ScheduleD/ExpensesNotReportedAmt024593
IRS990ScheduleD/ExpensesSubtotalAmt0653844
IRS990ScheduleD/FootnoteTextInd0X
IRS990ScheduleD/NetUnrealizedGainsInvstAmt02844
IRS990ScheduleD/RevenueNotReportedAmt027437
IRS990ScheduleD/RevenueSubtotalAmt0411288
IRS990ScheduleD/SupplementalInformationDetail/ExplanationTxt0The Association is a tax-exempt entity under Code Section 501(c)(3) of the Internal Revenue Code (the Code), and are exempt from federal income taxes on related income pursuant to Section 501(a) of the Code and is not considered to be a private foundation. In addition, the Association is subject to income tax on net income that is derived from business activities that are unrelated to their exempt purposes. Management has determined that the entity is not subject to unrelated business income tax and has not filed an Exempt Organization Business Income Tax Return (Form 990-T) with the IRS. Accordingly, no provision for income taxes is included in the financial statements. The Association has filed all of its known and required tax returns in a timely manner, including as permitted, allowed extensions.
IRS990ScheduleD/SupplementalInformationDetail/FormAndLineReferenceDesc0Part X, Line 2-Text in footnote regarding FIN 48 (ASC 740)
IRS990ScheduleD/TotalBookValueLandBuildingsAmt045270
IRS990ScheduleD/TotalExpensesPerForm990Amt0653844
IRS990ScheduleD/TotalRevenuePerForm990Amt0411288
IRS990ScheduleD/TotalRevEtcAuditedFinclStmtAmt0438725
IRS990ScheduleD/TotExpnsEtcAuditedFinclStmtAmt0678437
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/RegionTotalExpendituresAmt060000
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/RegionTotalExpendituresAmt137500
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/RegionTxt0Europe including Iceland and Greenland
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/RegionTxt1North America Not the United States
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/SpecificServicesProvidedTxt0Research
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/SpecificServicesProvidedTxt1Research
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/TypeOfActivitiesConductedTxt0Program services
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/TypeOfActivitiesConductedTxt1Program services
IRS990ScheduleF/BoycottCountriesInd0false
IRS990ScheduleF/ForeignCorpOwnershipInd0false
IRS990ScheduleF/ForeignPartnershipInd0false
IRS990ScheduleF/GrantRecordsMaintainedInd0true
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/CashGrantAmt030000
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/CashGrantAmt130000
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/CashGrantAmt230000
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/CashGrantAmt37500
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/PurposeOfGrantTxt0Research
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/PurposeOfGrantTxt1Research
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/PurposeOfGrantTxt2Research
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/PurposeOfGrantTxt3Research
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/RegionTxt0Europe including Iceland and Greenland
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/RegionTxt1North America Not the United States
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/RegionTxt2Europe including Iceland and Greenland
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/RegionTxt3North America Not the United States
IRS990ScheduleF/InterestInForeignTrustInd0false
IRS990ScheduleF/PassiveForeignInvestmestCoInd0false
IRS990ScheduleF/SubtotalSpentAmt097500
IRS990ScheduleF/Total501c3OrgCnt04
IRS990ScheduleF/TotalSpentAmt097500
IRS990ScheduleF/TransferToForeignCorpInd0false
IRS990ScheduleG/FundraisingEventInformationGrp/CharitableContributionsTotAmt0118766
IRS990ScheduleG/FundraisingEventInformationGrp/CharitableContriEvent1Amt0118766
IRS990ScheduleG/FundraisingEventInformationGrp/Event1Nm0Special Even
IRS990ScheduleG/FundraisingEventInformationGrp/GrossReceiptsEvent1Amt0118766
IRS990ScheduleG/FundraisingEventInformationGrp/GrossReceiptsTotalAmt0118766
IRS990ScheduleI/GrantRecordsMaintainedInd0true
IRS990ScheduleI/RecipientTable/CashGrantAmt072440
IRS990ScheduleI/RecipientTable/CashGrantAmt130000
IRS990ScheduleI/RecipientTable/CashGrantAmt215000
IRS990ScheduleI/RecipientTable/IRCSectionDesc0501c3
IRS990ScheduleI/RecipientTable/IRCSectionDesc1501c3
IRS990ScheduleI/RecipientTable/IRCSectionDesc2501c3
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt0University of Utah
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt1UCLA
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt2University of Central Florida
IRS990ScheduleI/RecipientTable/RecipientEIN0876000525
IRS990ScheduleI/RecipientTable/RecipientEIN1956006143

Document Assets

No mirrored PDF or thumbnail assets are attached yet.