Civic Intelligence

The Sturge-Weber Foundation

990 • Fiscal year 2019 • EIN 74-2485813

Jul 01, 2018 to Jun 30, 2019 • Filed on Feb 07, 2020

Organization ProfileWWW.STURGE-WEBER.ORG

View Organization Page

12345 Jones Road Suite 125Houston, TX 77070

(973) 895-4445

Siviq Scores

Precomputed percentiles for this filing year versus similar nonprofits in the same peer cohort.

Liabilities / Assets

72nd percentile

0.19x

Higher debt load relative to assets than 72% of similar nonprofits.

2019 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2019

Liabilities / Revenue

77th percentile

0.21x

Higher debt load relative to revenue than 77% of similar nonprofits.

2019 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2019

Net Margin

49th percentile

3.2%

Higher net margin than 49% of similar nonprofits.

2019 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2019

Top Officer Pay

77th percentile

$71,350

Higher top officer pay than 77% of similar nonprofits.

Top officer pay equals 10.6% of source-year revenue.

2019 filings • 501(c)3 • $500k-$1M nonprofits • Source year 2019

Asset Growth

79th percentile

22%

Faster asset growth than 79% of similar nonprofits.

2019 filings • 501(c)3 • $500k-$1M nonprofits • Annualized from 2018 to 2019

Revenue Growth

49th percentile

3.5%

Faster revenue growth than 49% of similar nonprofits.

2019 filings • 501(c)3 • $500k-$1M nonprofits • Annualized from 2018 to 2019

Balance Sheet
Liabilities / Assets72nd percentile

Assets

Up

$743,258

Up $136,090 (+22%) from 2018

Net Assets

Up

$601,968

Up $21,538 (+3.7%) from 2018

Liabilities

Up

$141,290

Up $114,552 (+428%) from 2018

Revenue And Expenses
Liabilities / Revenue77th percentileNet Margin49th percentile

Revenue

Up

$674,952

Up $22,585 (+3.5%) from 2018

Expenses

Up

$653,414

Up $71,077 (+12%) from 2018

Net Income

Down

$21,538

Down $48,492 (-69%) from 2018

Historical Trend

Balance Sheet Trend

Asset Growth79th percentile

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

$800K$600K$400K$200K$0Assets 2010: $285,798Liabilities 2010: $18,500Net Assets 2010: $267,2982010Assets 2011: $362,466Liabilities 2011: $55,212Net Assets 2011: $307,2542011Assets 2012: $347,787Liabilities 2012: $10,918Net Assets 2012: $336,8692012Assets 2013: $449,931Liabilities 2013: $53,888Net Assets 2013: $396,0432013Assets 2014: $430,100Liabilities 2014: $25,666Net Assets 2014: $404,4342014Assets 2015: $441,370Liabilities 2015: $54,391Net Assets 2015: $386,9792015Assets 2016: $475,850Liabilities 2016: $36,729Net Assets 2016: $439,1212016Assets 2017: $546,971Liabilities 2017: $36,571Net Assets 2017: $510,4002017Assets 2018: $607,168Liabilities 2018: $26,738Net Assets 2018: $580,4302018Assets 2019: $743,258Liabilities 2019: $141,290Net Assets 2019: $601,9682019Assets 2020: $736,726Liabilities 2020: $70,649Net Assets 2020: $666,0772020Assets 2021: $587,793Liabilities 2021: $98,608Net Assets 2021: $489,1852021Assets 2022: $522,921Liabilities 2022: $160,457Net Assets 2022: $362,4642022Assets 2023: $420,811Liabilities 2023: $71,463Net Assets 2023: $349,3482023Assets 2024: $411,067Liabilities 2024: $114,341Net Assets 2024: $296,7262024Assets 2025: $418,065Liabilities 2025: $66,364Net Assets 2025: $351,7012025

Highlighted filing

2019

Assets$743,258
Liabilities$141,290
Net Assets$601,968
Open 2019 Filing

Operations Trend

Revenue Growth49th percentile

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

$1.0M$500K$0-$500KExpenses 2010: $301,9892010Expenses 2011: $338,1262011Revenue 2012: $339,062Expenses 2012: $309,447Net Income 2012: $29,6152012Expenses 2013: $341,8622013Revenue 2014: $375,430Expenses 2014: $367,039Net Income 2014: $8,3912014Revenue 2015: $373,792Expenses 2015: $391,247Net Income 2015: -$17,4552015Revenue 2016: $455,151Expenses 2016: $403,009Net Income 2016: $52,1422016Revenue 2017: $547,171Expenses 2017: $475,892Net Income 2017: $71,2792017Revenue 2018: $652,367Expenses 2018: $582,337Net Income 2018: $70,0302018Revenue 2019: $674,952Expenses 2019: $653,414Net Income 2019: $21,5382019Revenue 2020: $640,019Expenses 2020: $575,910Net Income 2020: $64,1092020Revenue 2021: $298,520Expenses 2021: $475,412Net Income 2021: -$176,8922021Revenue 2022: $376,017Expenses 2022: $502,738Net Income 2022: -$126,7212022Revenue 2023: $427,359Expenses 2023: $440,475Net Income 2023: -$13,1162023Revenue 2024: $360,911Expenses 2024: $413,533Net Income 2024: -$52,6222024Revenue 2025: $392,112Expenses 2025: $337,137Net Income 2025: $54,9752025

Highlighted filing

2019

Revenue$674,952
Expenses$653,414
Net Income$21,538
Open 2019 Filing
Jump To
Filing Snapshot
Filing Period
Jul 1, 2018 to Jun 30, 2019
Signed
Feb 7, 2020
Return Version
2018v3.2
Gross Receipts
$674,952
Mission and Program Overview

Mission

To provide assistance to families affected by sturge-weber syndrome and port wine birthmark conditions.

Balance Sheet Detail
LineBeginningEndChange
Assets
Savings and Temporary Cash Investments$79,965$589,193▲ $509,228
Cash and Non-Interest-Bearing Accounts$515,634$119,878▼ $395,756
Prepaid Expenses and Deferred Charges$3,923$26,835▲ $22,912
Land, Buildings, and Equipment, Net$7,646$6,429▼ $1,217
Total Assets$607,168$743,258▲ $136,090
Other Assets Total-$923-
Liabilities
Grants Payable-$70,000-
Accounts Payable and Accrued Expenses$26,738$50,895▲ $24,157
Deferred Revenue-$20,395-
Total Liabilities$26,738$141,290▲ $114,552
Net Assets / Fund Balance
Unrestricted Net Assets$580,430$601,968▲ $21,538
Total Net Assets Fund Balance$580,430$601,968▲ $21,538
Total Liabilities and Net Assets / Fund Balance$607,168$743,258▲ $136,090

Asset Categories

AssetBook ValueDepreciationBasis
Equipment$6,429$20,591$27,020
Compensation and Service Providers
Top Officer Pay77th percentile

Employees

NameTitleFull / Part TimeBaseTotal
Karen L BallPresident/ceFT$71,350$71,350
Brian FisherCOOFT$55,750$55,750

Board Members and Trustees

NameTitle
Curt StantonChair
Jeffrey NeedhamDirector
Kremena LinquitiDirector
Kris SadensDirector
Witney ArchDirector
Woody CrouchDirector
Crystal ElliersSecretary
Steve PeltierTreasurer
Revenue and Support

Revenue Composition

Contributions and Grants
$669,747
Program Service Revenue
$0
Investment Income
$3,793
Other Revenue
$1,412
All Other Contributions
$669,747
Change in Net Assets
$21,538

Audited Revenue Reconciliation

Revenue per Audited Statements
$674,952
Total Revenue per Audited Statements
$674,952
Total Revenue per Form 990
$674,952
Expenses and Functional Allocation

Major Expense Lines

Line ItemAmount
Other Expenses$427,179
Salaries, Compensation, and Employee Benefits$156,235
Total Fundraising Expense$82,672
Grants and Similar Amounts Paid$70,000
Professional Fundraising Fees$0

Functional Expense Allocation

Line ItemProgramManagementFundraisingTotal
Travel$114,404$2,818$32,610$149,832
Current Officers, Directors, Trustees, and Key Employees$116,932$6,356$3,812$127,100
Office Expenses$59,951$1,375$9,152$70,478
Foreign Grants$50,000--$50,000
Fees for Services Other$16,359$2,905$11,602$30,866
Fees for Services Accounting$18,472$6,765$2,309$27,546
Grants to Domestic Orgs$20,000--$20,000
Occupancy$8,885$1,111$1,111$11,107
Other Employee Benefits$8,422$1,394$1,143$10,959
Payroll Taxes$9,418$914$503$10,835
Information Technology$4,399$1,714$1,221$7,334
All Other Expenses$1,135$2,764$2,174$6,073
Other Salaries and Wages$429$1,576$2,489$4,494
Other Expenses$4,425$5,303$13,937$4,425
Depreciation Depletion$2,347$259$259$2,865
Pension Plan Contributions$2,620$142$85$2,847
Insurance$1,952$435$243$2,630
Conferences and Meetings$1,579$22$22$1,623
Total Functional Expenses$534,889$35,853$82,672$653,414

Audited Expense Reconciliation

Line ItemAmount
Expenses per Audited Statements$653,414
Total Expenses per Audited Statements$653,414
Total Expenses per Form 990$653,414
International Activity

Grant and Assistance Recipients

RecipientLocationCategoryPurposeAmount
BOSTON CHILDREN'S HOSPITALBoston, MA-Research-

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
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

Interested-Person Transactions

Interested PartyRelationshipDescriptionShared RevenueAmount
Brian FisherBrother of CEOContract EmployeeNo$55,750
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 family members
Yes
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

Governance Explanations

Form 990, Page 6, Part VI, Line 2

“Brian fisher contractor brother of ceo”

Form 990, Page 6, Part VI, Line 11B

“A draft copy of the form 990 was provided to the board prior to filing with the irs.”

Form 990, Page 6, Part VI, Line 12C

“Monitoring and enforcement of the policy is regularly discussed by the governing body.”

Form 990, Page 6, Part VI, Line 19

“The board considers requests for copies of governing documents, policies, and financial statements on a case by case basis.”

Filing and Contact Details

Filer

Filer Name
The Sturge-weber Foundation
EIN
74-2485813
Phone
9738954445
Address
12345 JONES ROAD SUITE 125, HOUSTON, TX 77070

Signing Officer

Name
Karen L Ball
Title
President/CEO
Phone
9738954445
Signed
2020-02-07
Discuss with paid preparer
Yes

Organization Details

Principal Officer
Brian Fisher
Formed
1987
Legal Domicile
Co
Voting Board Members
9
Independent Board Members
8
Employees
3
Volunteers
11

Preparer

Firm
The Adams Group LLC
Address
400 S COLORADO BLVD STE 690, DENVER, CO 80246
Preparer
Jason D Adams CPA
Phone
3037333796
Supplemental Narrative

Additional Explanations

Form 990, Page 2, Part III, Line 4A

“The foundation drives patient engagement through diverse and robust projects, conferences and online support. The website is a rich resource of learning and uplifting stories of inspirational hope to cope with the diagnosis. The foundation sponsors an international conference every two years moving the location to allow fair access to all minimizing financial impact to attend. The foundation also sponsors regional educational conferences to build community in partnership with various clinical care network (ccn) instituions. The ccn's facilitate clinical studies and trials and annually establish goals which drive patient care and improve treatment. The foundation recently launched a task force initiative to build a rich volunteer network of knowledge and support around key areas impacting daily living and care. The houston home office staff and remote office staff support all the above programs and projects and regularly meet to ensure strategic goals are met.”

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IRS990/MoreThan5000KToOrgInd0true
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IRS990/NetAssetsOrFundBalancesEOYAmt0601968
IRS990/NondeductibleContributionsInd0false
IRS990/OccupancyGrp/FundraisingAmt01111
IRS990/OccupancyGrp/ManagementAndGeneralAmt01111
IRS990/OccupancyGrp/ProgramServicesAmt08885
IRS990/OccupancyGrp/TotalAmt011107
IRS990/OfficeExpensesGrp/FundraisingAmt09152
IRS990/OfficeExpensesGrp/ManagementAndGeneralAmt01375
IRS990/OfficeExpensesGrp/ProgramServicesAmt059951
IRS990/OfficeExpensesGrp/TotalAmt070478
IRS990/OfficerMailingAddressInd0false
IRS990/OperateHospitalInd0false
IRS990/Organization501c3Ind0X
IRS990/OrganizationFollowsSFAS117Ind0X
IRS990/OtherAssetsTotalGrp/EOYAmt0923
IRS990/OtherEmployeeBenefitsGrp/FundraisingAmt01143
IRS990/OtherEmployeeBenefitsGrp/ManagementAndGeneralAmt01394
IRS990/OtherEmployeeBenefitsGrp/ProgramServicesAmt08422
IRS990/OtherEmployeeBenefitsGrp/TotalAmt010959
IRS990/OtherExpensesGrp/Desc0SUBCONTRACTOR
IRS990/OtherExpensesGrp/Desc1OTHER DIRECT EXPENSES
IRS990/OtherExpensesGrp/Desc2CURATION AND AWARENESS
IRS990/OtherExpensesGrp/Desc3DIPLAY AND SHIPPING
IRS990/OtherExpensesGrp/FundraisingAmt013937
IRS990/OtherExpensesGrp/ManagementAndGeneralAmt05303
IRS990/OtherExpensesGrp/ProgramServicesAmt067402
IRS990/OtherExpensesGrp/ProgramServicesAmt121125
IRS990/OtherExpensesGrp/ProgramServicesAmt24633
IRS990/OtherExpensesGrp/ProgramServicesAmt34425
IRS990/OtherExpensesGrp/TotalAmt086642
IRS990/OtherExpensesGrp/TotalAmt121125
IRS990/OtherExpensesGrp/TotalAmt24633
IRS990/OtherExpensesGrp/TotalAmt34425
IRS990/OtherRevenueMiscGrp/Desc0OTHER
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IRS990/OtherRevenueMiscGrp/TotalRevenueColumnAmt01412
IRS990/OtherRevenueTotalAmt01412
IRS990/OtherSalariesAndWagesGrp/FundraisingAmt02489
IRS990/OtherSalariesAndWagesGrp/ManagementAndGeneralAmt01576
IRS990/OtherSalariesAndWagesGrp/ProgramServicesAmt0429
IRS990/OtherSalariesAndWagesGrp/TotalAmt04494
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IRS990/PayrollTaxesGrp/FundraisingAmt0503
IRS990/PayrollTaxesGrp/ManagementAndGeneralAmt0914
IRS990/PayrollTaxesGrp/ProgramServicesAmt09418
IRS990/PayrollTaxesGrp/TotalAmt010835
IRS990/PensionPlanContributionsGrp/FundraisingAmt085
IRS990/PensionPlanContributionsGrp/ManagementAndGeneralAmt0142
IRS990/PensionPlanContributionsGrp/ProgramServicesAmt02620
IRS990/PensionPlanContributionsGrp/TotalAmt02847
IRS990/PoliticalCampaignActyInd0false
IRS990/PrepaidExpensesDefrdChargesGrp/BOYAmt03923
IRS990/PrepaidExpensesDefrdChargesGrp/EOYAmt026835
IRS990/PrincipalOfficerNm0BRIAN FISHER
IRS990/ProfessionalFundraisingInd0false
IRS990/ProgSrvcAccomActy2Grp/Desc0THE FOUNDATION'S RESEARCH PROGRAM IS LEAD BY A GLOBAL TEAM OF RESEARCHERS THAT COMPRISE THE STURGE-WEBER FOUNDATION INTERNATIONAL RESEARCH NETWORK TO FACILITATE INNOVATIVE AND COLLABERATIVE RESEARCH INVESTIGATIONS. THE RESEARCH PROGRAM FUNDS A 50,000 LISA'S RESEARCH FELLOWSHIP, MULTIPLE TRAVEL GRANTS TO YOUNG INVESTIGATORS, MAINTAINS AN ONLINE 25,000 PATIENT FOR MAPPING CLINICAL DATA WITH DATA IN A BIO-RESPOSITORY. THE FOUNDATION ATTENDS NATIONAL CONFERENCES FOCUSED ON RESEARCH IN THE EYE, BRAIN, SKIN AND GENETIC EXPRESSIONS OF THE SYNDROME TO GENERATE AWARENESS AND ENGAGE YOUNG INVESTIGATORS TO JOIN THEIR CAUSE.
IRS990/ProgSrvcAccomActy2Grp/ExpenseAmt089019
IRS990/ProhibitedTaxShelterTransInd0false
IRS990/PYContributionsGrantsAmt0672481
IRS990/PYExcessBenefitTransInd0false
IRS990/PYGrantsAndSimilarPaidAmt050000
IRS990/PYInvestmentIncomeAmt01529
IRS990/PYOtherExpensesAmt0388721
IRS990/PYOtherRevenueAmt0-21643
IRS990/PYRevenuesLessExpensesAmt070030
IRS990/PYSalariesCompEmpBnftPaidAmt0143616
IRS990/PYTotalExpensesAmt0582337
IRS990/PYTotalRevenueAmt0652367
IRS990/ReconcilationRevenueExpnssAmt021538
IRS990/RegularMonitoringEnfrcInd0true
IRS990/RelatedEntityInd0false
IRS990/RelatedOrganizationCtrlEntInd0false
IRS990/ReportInvestmentsOtherSecInd0false
IRS990/ReportLandBuildingEquipmentInd0true
IRS990/ReportOtherAssetsInd0false
IRS990/ReportOtherLiabilitiesInd0false
IRS990/ReportProgramRelatedInvstInd0false
IRS990/SavingsAndTempCashInvstGrp/BOYAmt079965
IRS990/SavingsAndTempCashInvstGrp/EOYAmt0589193
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearAmt0669747
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus1YearAmt0672481
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus2YearsAmt0569837
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus3YearsAmt0546566
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/CurrentTaxYearMinus4YearsAmt0395711
IRS990ScheduleA/GiftsGrantsContriRcvd170Grp/TotalAmt02854342
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus3YearsAmt0535
IRS990ScheduleA/GrossInvestmentIncome170Grp/CurrentTaxYearMinus4YearsAmt0665
IRS990ScheduleA/GrossInvestmentIncome170Grp/TotalAmt01200
IRS990ScheduleA/GrossReceiptsRltdActivitiesAmt0-44282
IRS990ScheduleA/PublicOrganization170Ind0X
IRS990ScheduleA/PublicSupportCY170Pct00.94130
IRS990ScheduleA/PublicSupportPY170Pct00.93750
IRS990ScheduleA/PublicSupportTotal170Amt02690614
IRS990ScheduleA/SubstantialContributorsTotAmt0163728
IRS990ScheduleA/ThirtyThrPctSuprtTestsCY170Ind0X
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearAmt0669747
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus1YearAmt0672481
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus2YearsAmt0569837
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus3YearsAmt0546566
IRS990ScheduleA/TotalCalendarYear170Grp/CurrentTaxYearMinus4YearsAmt0395711
IRS990ScheduleA/TotalCalendarYear170Grp/TotalAmt02854342
IRS990ScheduleA/TotalSupportAmt02858335
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/CurrentTaxYearAmt02793
IRS990ScheduleA/UnrelatedBusinessNetIncm170Grp/TotalAmt02793
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/EquipmentGrp/BookValueAmt06429
IRS990ScheduleD/EquipmentGrp/DepreciationAmt020591
IRS990ScheduleD/EquipmentGrp/OtherCostOrOtherBasisAmt027020
IRS990ScheduleD/ExpensesSubtotalAmt0653414
IRS990ScheduleD/RevenueSubtotalAmt0674952
IRS990ScheduleD/TotalBookValueLandBuildingsAmt06429
IRS990ScheduleD/TotalExpensesPerForm990Amt0653414
IRS990ScheduleD/TotalRevenuePerForm990Amt0674952
IRS990ScheduleD/TotalRevEtcAuditedFinclStmtAmt0674952
IRS990ScheduleD/TotExpnsEtcAuditedFinclStmtAmt0653414
IRS990ScheduleF/AccountActivitiesOutsideUSGrp/RegionTxt0UNITED KINGDOM
IRS990ScheduleF/BoycottCountriesInd0false
IRS990ScheduleF/ForeignCorpOwnershipInd0false
IRS990ScheduleF/ForeignPartnershipInd0false
IRS990ScheduleF/GrantRecordsMaintainedInd0true
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/CashGrantAmt050000
IRS990ScheduleF/GrantsToOrgOutsideUSGrp/PurposeOfGrantTxt0RESEARCH
IRS990ScheduleF/InterestInForeignTrustInd0false
IRS990ScheduleF/PassiveForeignInvestmestCoInd0false
IRS990ScheduleF/SupplementalInformationDetail/ExplanationTxt0UNITED KINGDOM 0 0
IRS990ScheduleF/SupplementalInformationDetail/FormAndLineReferenceDesc0SCHEDULE F, PAGE 1, PART I, LINE 3
IRS990ScheduleF/TransferToForeignCorpInd0false
IRS990ScheduleI/GrantRecordsMaintainedInd0true
IRS990ScheduleI/RecipientTable/NonCashAssistanceAmt010000
IRS990ScheduleI/RecipientTable/NonCashAssistanceDesc0ACCRUED
IRS990ScheduleI/RecipientTable/PurposeOfGrantTxt0RESEARCH
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine1Txt0BOSTON CHILDREN'S HOSPITAL
IRS990ScheduleI/RecipientTable/RecipientBusinessName/BusinessNameLine2Txt0HARVARD MEDICAL SCHOOL
IRS990ScheduleI/RecipientTable/RecipientEIN0042774441
IRS990ScheduleI/RecipientTable/USAddress/AddressLine1Txt0300 LONGWOOD AVENUE
IRS990ScheduleI/RecipientTable/USAddress/CityNm0BOSTON
IRS990ScheduleI/RecipientTable/USAddress/StateAbbreviationCd0MA
IRS990ScheduleI/RecipientTable/USAddress/ZIPCd002115
IRS990/ScheduleJRequiredInd0false
IRS990ScheduleL/BusTrInvolveInterestedPrsnGrp/NameOfInterested/PersonNm0BRIAN FISHER
IRS990ScheduleL/BusTrInvolveInterestedPrsnGrp/RelationshipDescriptionTxt0BROTHER OF CEO
IRS990ScheduleL/BusTrInvolveInterestedPrsnGrp/SharingOfRevenuesInd0false
IRS990ScheduleL/BusTrInvolveInterestedPrsnGrp/TransactionAmt055750
IRS990ScheduleL/BusTrInvolveInterestedPrsnGrp/TransactionDesc0CONTRACT EMPLOYEE
IRS990ScheduleL/SupplementalInformationDetail/ExplanationTxt0THE BROTHER OF THE PRESIDENT/CEO IS PAID AS A CONTRACT EMPLOYEE. THE CEO IS NOT INVOLVED IN HIS EVALUATION.
IRS990ScheduleL/SupplementalInformationDetail/FormAndLineReferenceDesc0SCHEDULE L, PART V
IRS990/ScheduleORequiredInd0true
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt0THE FOUNDATION DRIVES PATIENT ENGAGEMENT THROUGH DIVERSE AND ROBUST PROJECTS, CONFERENCES AND ONLINE SUPPORT. THE WEBSITE IS A RICH RESOURCE OF LEARNING AND UPLIFTING STORIES OF INSPIRATIONAL HOPE TO COPE WITH THE DIAGNOSIS. THE FOUNDATION SPONSORS AN INTERNATIONAL CONFERENCE EVERY TWO YEARS MOVING THE LOCATION TO ALLOW FAIR ACCESS TO ALL MINIMIZING FINANCIAL IMPACT TO ATTEND. THE FOUNDATION ALSO SPONSORS REGIONAL EDUCATIONAL CONFERENCES TO BUILD COMMUNITY IN PARTNERSHIP WITH VARIOUS CLINICAL CARE NETWORK (CCN) INSTITUIONS. THE CCN'S FACILITATE CLINICAL STUDIES AND TRIALS AND ANNUALLY ESTABLISH GOALS WHICH DRIVE PATIENT CARE AND IMPROVE TREATMENT. THE FOUNDATION RECENTLY LAUNCHED A TASK FORCE INITIATIVE TO BUILD A RICH VOLUNTEER NETWORK OF KNOWLEDGE AND SUPPORT AROUND KEY AREAS IMPACTING DAILY LIVING AND CARE. THE HOUSTON HOME OFFICE STAFF AND REMOTE OFFICE STAFF SUPPORT ALL THE ABOVE PROGRAMS AND PROJECTS AND REGULARLY MEET TO ENSURE STRATEGIC GOALS ARE MET.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt1BRIAN FISHER CONTRACTOR BROTHER OF CEO
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt2A DRAFT COPY OF THE FORM 990 WAS PROVIDED TO THE BOARD PRIOR TO FILING WITH THE IRS.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt3MONITORING AND ENFORCEMENT OF THE POLICY IS REGULARLY DISCUSSED BY THE GOVERNING BODY.
IRS990ScheduleO/SupplementalInformationDetail/ExplanationTxt4THE BOARD CONSIDERS REQUESTS FOR COPIES OF GOVERNING DOCUMENTS, POLICIES, AND FINANCIAL STATEMENTS ON A CASE BY CASE BASIS.
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc0FORM 990, PAGE 2, PART III, LINE 4A
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc1FORM 990, PAGE 6, PART VI, LINE 2
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc2FORM 990, PAGE 6, PART VI, LINE 11B
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc3FORM 990, PAGE 6, PART VI, LINE 12C
IRS990ScheduleO/SupplementalInformationDetail/FormAndLineReferenceDesc4FORM 990, PAGE 6, PART VI, LINE 19
IRS990/SchoolOperatingInd0false
IRS990/SignificantChangeInd0false
IRS990/SignificantNewProgramSrvcInd0false
IRS990/SubjectToExcsTaxNetInvstIncInd0false
IRS990/SubjectToProxyTaxInd0false
IRS990/SubjToTaxRmnrtnExPrchtPymtInd0false
IRS990/TaxablePartyNotificationInd0false
IRS990/TaxExemptBondsInd0false
IRS990/TempOrPermanentEndowmentsInd0false
IRS990/TerminateOperationsInd0false
IRS990/TotalAssetsBOYAmt0607168
IRS990/TotalAssetsEOYAmt0743258
IRS990/TotalAssetsGrp/BOYAmt0607168
IRS990/TotalAssetsGrp/EOYAmt0743258
IRS990/TotalCompGreaterThan150KInd0false
IRS990/TotalContributionsAmt0669747
IRS990/TotalEmployeeCnt03
IRS990/TotalFunctionalExpensesGrp/FundraisingAmt082672
IRS990/TotalFunctionalExpensesGrp/ManagementAndGeneralAmt035853

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Filings

Displayed year

2019 • Form 990Detailed filing. Detailed filing data is available for this year.

Open filing
Assets
$743,258
Liabilities
$141,290
Net assets
$601,968
Revenue
$674,952
Expenses
$653,414
Net income
$21,538
Balance SheetOperations
YearAssetsLiabilitiesNet AssetsRevenueExpensesNet Income
2025Detailed filing. Detailed filing data is available for this year.$4.18$0.66$3.52$3.92$3.37$0.55
2024Detailed filing. Detailed filing data is available for this year.$4.11$1.14$2.97$3.61$4.14$0.53
2023Detailed filing. Detailed filing data is available for this year.$4.21$0.71$3.49$4.27$4.40$0.13
2022Detailed filing. Detailed filing data is available for this year.$5.23$1.60$3.62$3.76$5.03$1.27
2021Detailed filing. Detailed filing data is available for this year.$5.88$0.99$4.89$2.99$4.75$1.77
2020Detailed filing. Detailed filing data is available for this year.$7.37$0.71$6.66$6.40$5.76$0.64
2019Detailed filing. Detailed filing data is available for this year.$7.43$1.41$6.02$6.75$6.53$0.22
2018Detailed filing. Detailed filing data is available for this year.$6.07$0.27$5.80$6.52$5.82$0.70
2017Detailed filing. Detailed filing data is available for this year.$5.47$0.37$5.10$5.47$4.76$0.71
2016Detailed filing. Detailed filing data is available for this year.$4.76$0.37$4.39$4.55$4.03$0.52
2015Detailed filing. Detailed filing data is available for this year.$4.41$0.54$3.87$3.74$3.91$0.17
2014Detailed filing. Detailed filing data is available for this year.$4.30$0.26$4.04$3.75$3.67$0.08
2013Facts available. Structured filing facts are available, but richer extracted sections are limited.$4.50$0.54$3.96$3.42
2012Summary only. Only limited summary data is available for this year.$3.48$0.11$3.37$3.39$3.09$0.30
2011Facts available. Structured filing facts are available, but richer extracted sections are limited.$3.62$0.55$3.07$3.38
2010Facts available. Structured filing facts are available, but richer extracted sections are limited.$2.86$0.19$2.67$3.02
Peer Organizations

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