NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC: Form 990, tax year 2024

View the entire original 990 at ProPublica ↗

Organization: NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC (EIN 95-3018799)
Tax period: 2024-01-01 to 2024-12-31
Filed: 2025-04-11
IRS object ID: 202531019349300508
Schema version: 2024v5.1
Source: Download XML · Original 990 at ProPublica

Every field in the e-filed return. Faint text is the IRS element name, for citing.

Return header
Form 990
Schedule A
Schedule B
Schedule C
Schedule D
Schedule F
Schedule G
Schedule I
Schedule J
Schedule M
Schedule O
Schedule R

Return header ReturnHeader

Field	Value	IRS element (for citing)
Return	2025-04-11T08:26:26-05:00	ReturnTs
Tax Period End	2024-12-31	TaxPeriodEndDt

Preparer Firm PreparerFirmGrp

Field	Value	IRS element (for citing)
Preparer Firm EIN	470900880	PreparerFirmEIN

Preparer Firm Name PreparerFirmName

Field	Value	IRS element (for citing)
Business Name Line1	CALIBRE CPA GROUP PLLC	BusinessNameLine1Txt

Preparer US Address PreparerUSAddress

Field	Value	IRS element (for citing)
Address Line1	7501 WISCONSIN AVENUE SUITE 1200	AddressLine1Txt
Address Line2	WEST	AddressLine2Txt
City	BETHESDA	CityNm
State Abbreviation	MD	StateAbbreviationCd
ZIP	20814	ZIPCd

Field	Value	IRS element (for citing)
Return Type	990	ReturnTypeCd
Tax Period Begin	2024-01-01	TaxPeriodBeginDt

Filer Filer

Field	Value	IRS element (for citing)
EIN	953018799	EIN

Business Name BusinessName

Field	Value	IRS element (for citing)
Business Name Line1	NATIONAL TUBEROUS SCLEROSIS	BusinessNameLine1Txt
Business Name Line2	ASSOCIATION	BusinessNameLine2Txt

Field	Value	IRS element (for citing)
Business Name Control	NATI	BusinessNameControlTxt
Phone	3015629890	PhoneNum

US Address USAddress

Field	Value	IRS element (for citing)
Address Line1	8737 COLESVILLE ROAD 400	AddressLine1Txt
City	SILVER SPRING	CityNm
State Abbreviation	MD	StateAbbreviationCd
ZIP	20910	ZIPCd

Business Officer BusinessOfficerGrp

Field	Value	IRS element (for citing)
Person	KARI L ROSBECK	PersonNm
Person Title	PRESIDENT & CEO	PersonTitleTxt
Phone	3015629890	PhoneNum
Signature	2025-04-11	SignatureDt
Discuss With Paid Preparer	Yes (1)	DiscussWithPaidPreparerInd

Field	Value	IRS element (for citing)
IRS Responsible Prty Info Curr	Yes (1)	IRSResponsiblePrtyInfoCurrInd

Preparer Person PreparerPersonGrp

Field	Value	IRS element (for citing)
Preparer Person	ERIN CRANMER	PreparerPersonNm
PTIN	P01712644	PTIN
Phone	2023319880	PhoneNum
Preparation	2025-04-11	PreparationDt

Field	Value	IRS element (for citing)
Tax	2024	TaxYr
Build TS	2025-03-06 01:10:19Z	BuildTS

Form 990 IRS990

Field	Value	IRS element (for citing)
Address Change	Yes (X)	AddressChangeInd

Doing Business As Name DoingBusinessAsName

Field	Value	IRS element (for citing)
Business Name Line1	TSC ALLIANCE	BusinessNameLine1Txt

Field	Value	IRS element (for citing)
Principal Officer	KARI L ROSBECK	PrincipalOfficerNm

US Address USAddress

Field	Value	IRS element (for citing)
Address Line1	8737 COLESVILLE ROAD 400	AddressLine1Txt
City	SILVER SPRING	CityNm
State Abbreviation	MD	StateAbbreviationCd
ZIP	20910	ZIPCd

Field	Value	IRS element (for citing)
Gross Receipts	$12,010,053	GrossReceiptsAmt
Group Return For Affiliates	0	GroupReturnForAffiliatesInd
Organization501c3	Yes (X)	Organization501c3Ind
Website Address	WWW.TSCALLIANCE.ORG	WebsiteAddressTxt
Type Of Organization Corp	Yes (X)	TypeOfOrganizationCorpInd
Formation	1975	FormationYr
Legal Domicile State	CA	LegalDomicileStateCd
Activity Or Mission	TO IMPROVE QUALITY OF LIFE FOR EVERYONE AFFECTED BY TUBEROUS SCLEROSIS COMPLEX BY CATALYZING NEW TREATMENTS, DRIVING RESEARCH TOWARD A CURE AND EXPANDING ACCESS TO LIFELONG SUPPORT.	ActivityOrMissionDesc
Voting Members Governing Body	27	VotingMembersGoverningBodyCnt
Voting Members Independent	27	VotingMembersIndependentCnt
Total Employee	26	TotalEmployeeCnt
Total Volunteers	373	TotalVolunteersCnt
Total Gross UBI	$0	TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm	$0	NetUnrelatedBusTxblIncmAmt
PY Contributions Grants	$6,747,948	PYContributionsGrantsAmt
CY Contributions Grants	$7,048,334	CYContributionsGrantsAmt
PY Program Service Revenue	$2,815,353	PYProgramServiceRevenueAmt
CY Program Service Revenue	$2,105,029	CYProgramServiceRevenueAmt
PY Investment Income	$36,732	PYInvestmentIncomeAmt
CY Investment Income	$52,809	CYInvestmentIncomeAmt
PY Other Revenue	$416,350	PYOtherRevenueAmt
CY Other Revenue	$794,723	CYOtherRevenueAmt
PY Total Revenue	$10,016,383	PYTotalRevenueAmt
CY Total Revenue	$10,000,895	CYTotalRevenueAmt
PY Grants And Similar Paid	$845,292	PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid	$730,927	CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members	$0	PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members	$0	CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid	$3,024,376	PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid	$3,153,884	CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns	$0	PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns	$0	CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense	$1,348,202	CYTotalFundraisingExpenseAmt
PY Other Expenses	$4,597,980	PYOtherExpensesAmt
CY Other Expenses	$4,775,207	CYOtherExpensesAmt
PY Total Expenses	$8,467,648	PYTotalExpensesAmt
CY Total Expenses	$8,660,018	CYTotalExpensesAmt
PY Revenues Less Expenses	$1,548,735	PYRevenuesLessExpensesAmt
CY Revenues Less Expenses	$1,340,877	CYRevenuesLessExpensesAmt
Total Assets BOY	$16,085,768	TotalAssetsBOYAmt
Total Assets EOY	$17,254,701	TotalAssetsEOYAmt
Total Liabilities BOY	$2,088,420	TotalLiabilitiesBOYAmt
Total Liabilities EOY	$1,888,588	TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY	$13,997,348	NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY	$15,366,113	NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part III	Yes (X)	InfoInScheduleOPartIIIInd
Mission	TO IMPROVE QUALITY OF LIFE FOR EVERYONE AFFECTED BY TUBEROUS SCLEROSIS COMPLEX BY CATALYZING NEW TREATMENTS, DRIVING RESEARCH TOWARD A CURE AND EXPANDING ACCESS TO LIFELONG SUPPORT.	MissionDesc
Significant New Program Srvc	0	SignificantNewProgramSrvcInd
Significant Change	0	SignificantChangeInd
Expense	$4,810,946	ExpenseAmt
Grant	$725,619	GrantAmt
Revenue	$2,098,994	RevenueAmt
Desc	RESEARCH PROGRAM STIMULATES AND SUPPORTS BASIC, TRANSLATIONAL, AND CLINICAL RESEARCH ON THE VARIOUS MANIFESTATIONS OF TUBEROUS SCLEROSIS COMPLEX (TSC) TO FURTHER THE DEVELOPMENT OF CLINICAL THERAPIES AND, ULTIMATELY, A CURE FOR TSC. DIRECTED BY STEVEN L. ROBERDS, PHD, CHIEF SCIENTIFIC OFFICER, THE TSC ALLIANCE RESEARCH PROGRAM BUILDS AND FOSTERS COLLABORATIONS BETWEEN BASIC AND CLINICAL RESEARCHERS BY COLLECTING AND DISTRIBUTING TSC NATURAL HISTORY DATA AND BIOSAMPLES, THROUGH COLLABORATIVE PRECLINICAL AND CLINICAL RESEARCH PROGRAMS, AND BY HOSTING BIENNIAL INTERNATIONAL TSC RESEARCH CONFERENCES.SINCE 1984, THE TSC ALLIANCE HAS INVESTED MORE THAN $39 MILLION INTO TSC RESEARCH PROJECTS THROUGH GRANTS AND CONTRACTS: $20.9 MILLION IN RESEARCH GRANTS AND POSTDOCTORAL FELLOWSHIPS, $5.5 MILLION INTO THE NATURAL HISTORY DATABASE AND BIOSAMPLE REPOSITORY, $11.6 MILLION INTO THE PRECLINICAL CONSORTIUM, AND $1.8 MILLION INTO THE CLINICAL RESEARCH CONSORTIUM. GRANT AND FELLOWSHIP APPLICATIONS ARE REVIEWED IN A THREE-STEP PROCESS: (1) ALL APPLICATIONS ARE REVIEWED BY A COMMITTEE COMPRISED OF SCIENTISTS KNOWLEDGEABLE ABOUT THE TOPIC AREA FOR SCIENTIFIC MERIT AND OF CAREGIVERS OR ADULTS AFFECTED BY TSC FOR POTENTIAL IMPACT ON THE LIVES OF THOSE AFFECTED BY TSC; (2) THE SCIENCE AND MEDICAL COMMITTEE OF THE BOARD OF DIRECTORS EVALUATES THE GRANT REVIEW COMMITTEE'S RECOMMENDATIONS AND THE RELEVANCE OF THE APPLICATIONS TO THE TSC ALLIANCE'S FUNDING PRIORITIES; AND (3) THE BOARD OF DIRECTORS THEN REVIEWS THE RECOMMENDATIONS OF THE SCIENCE AND MEDICAL COMMITTEE AND MAKES FINAL APPROVAL FOR FUNDING. FOR A COMPLETE LIST OF CURRENTLY FUNDED PROJECTS AND AN ARCHIVE OF PAST AWARDEES, PLEASE VISIT TSCALLIANCE.ORG/RESEARCHERS/GRANTS-FUNDING/.IMPLEMENTED IN 2006, THE TSC NATURAL HISTORY DATABASE (NHD) CAPTURES CLINICAL DATA TO DOCUMENT THE IMPACT OF THE DISEASE ON A PERSON'S HEALTH OVER HIS/HER LIFETIME. THE DATABASE SERVES AS A RESOURCE OF INFORMATION THAT HELPS TSC RESEARCHERS BETTER UNDERSTAND THE PROGRESSION OF THE DISEASE, DESIGN HYPOTHESIS-DRIVEN QUESTIONS TO HASTEN THE DISCOVERY OF NEW TREATMENTS AND IDENTIFY PERSONS WITH TSC WHO ARE ELIGIBLE TO PARTICIPATE IN RESEARCH STUDIES. AS OF DECEMBER 2024, THE NATURAL HISTORY DATABASE CONTAINED 2,780 PARTICIPANTS ENROLLED IN THE PROJECT FROM AMONG 22 TSC CLINIC SITES AND THROUGH THE TSC ALLIANCE. THE TSC ALLIANCE PROVIDES FUNDING TO PARTICIPATING CLINICS TO PERFORM DATA ENTRY, MONITORS THE INTEGRITY OF THE DATABASE, AND MAKES DATA AVAILABLE TO INVESTIGATORS TO ANSWER SPECIFIC RESEARCH QUESTIONS AND IDENTIFY POTENTIAL PARTICIPANTS FOR CLINICAL TRIALS AND STUDIES BUILDING UPON THE NATURAL HISTORY DATABASE, THE TSC BIOSAMPLE REPOSITORY IS A TSC ALLIANCE-DIRECTED PROJECT INITIATED IN 2014 THAT WILL IMPACT RESEARCH FOR DECADES TO COME. THE TSC ALLIANCE'S SCIENCE AND MEDICAL COMMITTEE IDENTIFIED THIS AS A GAP THAT CAN ONLY BE FILLED EFFECTIVELY WITH LEADERSHIP OF THE TSC ALLIANCE, GUIDED BY A STEERING COMMITTEE OF CLINICIANS AND RESEARCHERS. HIGH-QUALITY BIOSAMPLES SUCH AS BLOOD, DNA, AND TISSUES LINKED TO DETAILED CLINICAL DATA ARE CRITICAL FOR RESEARCHERS TO UNDERSTAND WHY TSC IS SO DIFFERENT FROM PERSON TO PERSON. SAMPLES IN THE REPOSITORY ARE LINKED TO DETAILED CLINICAL DATA IN OUR EXISTING TSC NATURAL HISTORY DATABASE AND ARE AVAILABLE TO QUALIFIED RESEARCHERS WORLDWIDE. SAMPLES ARE HOUSED AT AND DISTRIBUTED FROM THE VAN ANDEL INSTITUTE IN GRAND RAPIDS, MI, UNDER CONTROL OF THE TSC ALLIANCE. AS OF DECEMBER 2024, THE BIOSAMPLE REPOSITORY HAS ACQUIRED 2,917 BLOOD, BUCCAL (CHEEK) SWAB, OR TISSUE SAMPLES. SINCE INCEPTION, 3,370 PORTIONS OF SAMPLES HAVE BEEN DISTRIBUTED TO 50 DISTINCT RESEARCHERS FOR 59 DISTINCT PROJECTS.THE ORGANIZATION CONTINUES TO GROW THE BIOSAMPLE REPOSITORY BY COLLECTING BLOOD SAMPLES ANNUALLY FROM PARTICIPANTS WHO VOLUNTEER TO DO SO, ENABLING RESEARCHERS TO STUDY CHANGES IN PROTEINS AND OTHER MOLECULES IN THE BLOOD OVER TIME; ADDING ADDITIONAL TSC CLINICS AS PARTICIPATING BIOSAMPLE REPOSITORY COLLECTION SITES; AND COLLECTING BLOOD USING MOBILE PHLEBOTOMY, ENABLING PEOPLE TO DONATE SAMPLES REGARDLESS OF WHERE THEY LIVE IN THE US AND WHETHER THEY ARE SEEN AT A TSC CLINIC. SINCE THE INCEPTION OF OUR MOBILE PHLEBOTOMY INITIATIVE, WE HAVE ACQUIRED 557 BLOOD SAMPLES VIA MOBILE PHLEBOTOMY. TO ENCOURAGE AND ENABLE MORE RESEARCHERS TO UTILIZE BIOSAMPLES, THE TSC ALLIANCE AWARDED THREE SEED GRANTS IN 2024, TOTALING $43,625, TO LABS THAT SUBMITTED MERITORIOUS AND INNOVATIVE IDEAS FOR RESEARCH ON TSC BIOSAMPLES.THE TSC ALLIANCE'S WHOLE-GENOME SEQUENCING (WGS) INITIATIVE USING DNA FROM BLOOD SAMPLES IN OUR BIOSAMPLE REPOSITORY SEQUENCED AN ADDITIONAL 131 SAMPLES IN 2024, TOTALING 242 SAMPLES SINCE INCEPTION. THIS INITIATIVE SUPPORTS CLINICAL VALIDATION OF VARIANTS FOUND VIA WGS IN EITHER THE TSC1 OR TSC2 GENE, AND GENETIC RESULTS ARE OFFERED BACK TO PARTICIPANTS ALONG WITH A GENETIC COUNSELING SESSION FREE OF CHARGE TO THE FAMILY TO HELP THEM BETTER UNDERSTAND THEIR UNIQUE TSC DIAGNOSIS AND PROVIDE VALUABLE INFORMATION FOR FUTURE DECISION MAKING SUCH AS FAMILY PLANNING.IN DECEMBER 2021, THE TSC ALLIANCE ADDED THE TSC SELF-REPORT PORTAL TO THE TSC NATURAL HISTORY DATABASE. THIS PORTAL PERMITS THE COLLECTION OF PATIENT-REPORTED OUTCOMES ON HOW TSC AFFECTS INDIVIDUALS AND FAMILIES, WHICH WILL COMPLEMENT MEDICAL DATA IN THE NATURAL HISTORY DATABASE. THE PURPOSE OF THIS INITIATIVE IS TO HELP THE TSC ALLIANCE AND TSC RESEARCHERS BETTER UNDERSTAND THE PERSPECTIVE OF THOSE AFFECTED BY TSC TO DEVELOP TOOLS TO MEASURE IMPROVEMENT IN AREAS MOST IMPORTANT TO THE TSC COMMUNITY. EVENTUALLY, THESE MEASUREMENTS CAN BE USED TO IDENTIFY ENDPOINTS FOR CLINICAL TRIALS AND EVIDENCE-BASED GUIDELINES FOR TREATMENT.ONE OF THE MOST IMPACTFUL ASPECTS OF TSC ON THE QUALITY OF LIFE FOR PEOPLE LIVING WITH TSC IS TSC-ASSOCIATED NEUROPSYCHIATRIC DISORDERS (TAND). THEREFORE, THE TSC ALLIANCE'S FIRST USE OF THE PORTAL IS THROUGH COLLABORATION WITH THE TANDEM PROJECT (EMPOWERING FAMILIES THROUGH TECHNOLOGY: A MOBILE-HEALTH PROJECT TO REDUCE THE TAND IDENTIFICATION AND TREATMENT GAP) BY ALLOWING THE COMMUNITY TO COMPLETE THE SELF-QUANTIFIED TAND CHECKLIST (TAND-SQ). AT THE END OF 2024, 83 INDIVIDUALS HAD COMPLETED THE TAND-SQ THROUGH THE SELF-REPORT PORTAL.THE TSC ALLIANCE LAUNCHED THE TSC PRECLINICAL CONSORTIUM IN 2015 TO HELP ADVANCE MORE DRUG CANDIDATES INTO CLINICAL TESTING. TO ACHIEVE THIS END, THE PRECLINICAL CONSORTIUM PROVIDES THE INFRASTRUCTURE TO FOSTER COLLABORATION BETWEEN ACADEMIA AND PHARMACEUTICAL INDUSTRY RESEARCHERS AND FOR ACCESS TO RESOURCES DESIGNED TO HELP FACILITATE DRUG DEVELOPMENT IN TSC. COLLABORATING WITH THE TSC COMMUNITY, THE CONSORTIUM HAS IDENTIFIED AND IMPLEMENTED ROBUST AND REPRODUCIBLE CELL AND ANIMAL MODELS FOR TSC MANIFESTATIONS INCLUDING TUMORS, EPILEPSY, AND TAND. IN 2022, THE TSC ALLIANCE ENTERED INTO A PARTNERSHIP WITH THE LAM FOUNDATION TO ADD LAM MOUSE MODELS TO THE PRECLINICAL CONSORTIUM. THE TSC ALLIANCE HAS LICENSES TO USE SPECIFIC TSC MOUSE MODELS FOR EXPERIMENTS CARRIED OUT BY THE PRECLINICAL CONSORTIUM, AND ALL MOUSE LICENSE AGREEMENTS INCLUDE THE RIGHTS FOR THE TSC ALLIANCE TO PERFORM EXPERIMENTS UNDER CONTRACT FOR COMMERCIAL ENTITIES. THIS ENSURES DATA GENERATED BY THE PRECLINICAL CONSORTIUM CAN BE USED TO ACCELERATE THE DEVELOPMENT OF NEW TREATMENTS BY COMMERCIAL ENTITIES AS WELL AS ACADEMIC INVESTIGATORS. EXPERIMENTS ARE EXECUTED AT PARTNERING RESEARCH INSTITUTIONS TO ENSURE CONSISTENCY IN TESTING, DATA ACQUISITION AND INTERPRETATION. EPILEPSY STUDIES ARE CONDUCTED AT PSYCHOGENICS (US), AND THE TUMOR GRAFT MODEL AND CELL-BASED ASSAYS ARE CONDUCTED AT PORSOLT (FRANCE). THE VAN ANDEL RESEARCH INSTITUTE, A NON-PROFIT RESEARCH ORGANIZATION, MAINTAINS A COLONY OF TSC2+/- AJ MICE AND F L7-CRE-TSC2 MICE ON BEHALF OF THE PRECLINICAL CONSORTIUM. THE PRECLINICAL CONSORTIUM INVITES COMPOUND NOMINATIONS FROM ACADEMIC AND INDUSTRY RESEARCHERS TO CONTINUE TO REFRESH OUR PIPELINE BASED ON THE LATEST DATA AND NOVEL IDEAS. THE NOMINATIONS ARE PEER REVIEWED BY CONSORTIUM MEMBERS AND PRIORITIZED BY THE PRECLINICAL CONSORTIUM STEERING COMMITTEE FOR FUNDING BY THE TSC ALLIANCE. IF THE TSC ALLIANCE FUNDS THE STUDY, THE DATA ARE SHARED WITH THE CONSORTIUM FOR TRANSPARENCY AND STIMULATION OF ADDITIONAL HYPOTHESES. A MEMBERS MEETING IS HELD ANNUALLY TO KEEP MEMBERS ENGAGED AND ALIGNED ON THE CONSORTIUM'S STRATEGY AND PRIORITIES. PARTNERSHIP WITH PHARMACEUTICAL COMPANIES IS AN IMPORTANT ASPECT OF THE CONSORTIUM, AS THESE ORGANIZATIONS HAVE THE INFRASTRUCTURE TO EFFICIENTLY MOVE PRECLINICAL RESEARCH FINDINGS TO CLINICAL TESTING AND EVENTUALLY COMMERCIAL DISTRIBUTION. THE PRECLINICAL CONSORTIUM ENDED 2024 WITH 10 ACTIVE INDUSTRY PARTNERS, INCREASING THE TOTAL NUMBER TO 24 INDUSTRY PARTNERS SINCE 2016.	Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

Field	Value	IRS element (for citing)
Expense	$1,034,068	ExpenseAmt
Desc	SUPPORT SERVICES. SEE SCHEDULE O FOR FULL PROGRAM DESCRIPTION.	Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

Field	Value	IRS element (for citing)
Expense	$478,028	ExpenseAmt
Desc	PUBLIC HEALTH. SEE SCHEDULE O FOR FULL PROGRAM DESCRIPTION.	Desc

Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp

Field	Value	IRS element (for citing)
Expense	$391,662	ExpenseAmt
Grant	$5,308	GrantAmt
Desc	GOVERNMENT RELATIONS EFFORTS FOCUS ON INCREASING FEDERAL AND STATE APPROPRIATIONS FOR TSC RESEARCH, RAISING AWARENESS, AND COLLABORATING WITH GOVERNMENT PARTNERS TO DRIVE TSC RESEARCH FORWARD AND IMPROVE CLINICAL CARE AND TREATMENT OPTIONS FOR INDIVIDUALS WITH TSC. ON THE STATE LEVEL, THE TSC ALLIANCE ADVOCATED FOR STATE FUNDING FOR TSC CENTERS IN ALABAMA, MISSOURI, AND MARYLAND, RESULTING IN AT LEAST $1.275 MILLION IN STATE APPROPRIATIONS. THE 2024 MARCH ON CAPITOL HILL WAS HELD FEBRUARY 28 WITH CONGRESSIONAL MEETINGS TAKING PLACE THROUGH MID-MARCH. MORE THAN 130 PEOPLE PARTICIPATED IN OVER 367 IN-PERSON AND VIRTUAL MEETINGS. OUR HOUSE DEAR COLLEAGUE LETTER FOR FY25 WAS CO-SPONSORED BY REPRESENTATIVES FITZPATRICK (R-PA) AND RASKIN (D-MD) AND CLOSED WITH 185 SIGNERS. THE SENATE DEAR COLLEAGUE LETTER WAS CO-SPONSORED BY SENATORS CRAMER (R-ND) AND HEINRICH (D-NM) AND CLOSED WITH 41 SIGNERS.TOTAL FUNDING FOR THE TSCRP HAS BEEN $121 MILLION SINCE 2002, INCLUDING A $8 MILLION APPROPRIATION FOR FY24. RESEARCH PERFORMED THROUGH THIS PROGRAM HAS RECENTLY LED TO ADDITIONAL CLINICAL TRIALS INCLUDING DETERMINING IF IMATINIB, A DRUG FDA-APPROVED FOR CANCER, CAN SAFELY IMPROVE LEVELS OF VEGF-D, A BIOMARKER OF LYMPHANGIOLEIOMYOMATOSIS (LAM), A LIFE-THREATENING LUNG MANIFESTATION OF TSC, FUNDED IN FY2013; TWO TSCRP AWARDS IN FY2012 AND FY2015 THAT ENABLED GENERATION OF A POTENTIAL APPROACH FOR GENE THERAPY OF TSC, WHICH HAS SHOWN PROMISING RESULTS IN A MOUSE MODEL OF TSC TUMORS IN THE BRAIN; A MULTI-SITE CLINICAL TRIAL TESTING THE EFFICACY OF AN EXPERIMENTAL TOPICAL RAPAMYCIN CREAM TO TREAT THE DISFIGURING FACIAL TUMORS, CALLED FACIAL ANGIOFIBROMAS, CAUSED BY TSC FUNDED IN FY2010 THAT LED THE THIRD FDA-APPROVED DRUG TO TREAT TSC IN APRIL 2022; AND A CLINICAL RESEARCH NETWORK THAT WAS CREATED TO TEST POTENTIAL NEW THERAPIES, TO VALIDATE BIOMARKERS, AND TO LEARN THE NATURAL HISTORY OF LEADING TO A CLINICAL TRIAL FUNDED IN FY2012. DATA OBTAINED FROM AN FY2010 TSCRP CLINICAL RESEARCH AWARD TO DEFINE EARLY AUTISM PREDICTORS IN TSC AND AN FY2014 TSCRP AWARD FOR A PILOT CLINICAL TRIAL IS BEING TESTED IN A LARGE, NIH-FUNDED CLINICAL TRIAL LOOKING AT THE EFFECTIVENESS OF A BEHAVIORAL INTERVENTION STRATEGY, JASPER, TO IMPROVE OUTCOMES IN CHILDREN WITH AUTISM. THE TSCRP HAS ALSO FUNDED RESEARCH TO DEVELOP ANIMAL MODELS OF TSC THAT HAVE SEIZURES, ENABLING A BETTER UNDERSTANDING OF THE ETIOLOGY OF TSC. BASED ON DATA FROM TSCRP-FUNDED ANIMAL MODELS OF TSC THAT HAVE SEIZURES AND SHARE PATHOLOGY RELATED TO THAT OF TRAUMATIC BRAIN INJURY, AN INDUSTRY-SPONSORED CLINICAL TRIAL DEMONSTRATED THE EFFECTIVENESS THE MTOR INHIBITOR, EVEROLIMUS, AT TREATING EPILEPSY IN MANY INDIVIDUALS WITH TSC. NONE OF THIS PROGRESS WOULD HAVE BEEN POSSIBLE WITHOUT THE CRITICAL SUPPORT PROVIDED THROUGH THE TSCRP.GLOBAL OUTREACH WORKS TO ADDRESS UNMET NEEDS WITHIN THE GLOBAL TSC COMMUNITY. THE PROGRAM PROVIDES THE OPPORTUNITY FOR THE TSC ALLIANCE TO SHARE EXPERIENCES AND ASSIST IN THE START-UP OF SUPPORT OF TSC-RELATED ORGANIZATIONS IN OTHER COUNTRIES. A GLOBAL ALLIANCE IS A STRUCTURED GROUP OF EMPOWERED AND CARING VOLUNTEERS WHO WORK CLOSELY WITH THE TSC ALLIANCE TO FACILITATE LOCAL CONNECTIONS FOR INDIVIDUALS AND FAMILIES AFFECTED BY TSC AND RAISE REVENUE AND AWARENESS WHILE SUPPORTING THE MISSION OF THE ORGANIZATION. THE TSC ALLIANCE HAS FIVE GLOBAL PARTNERSHIPS, INCLUDING TSC ALLIANCE OF ISRAEL, TS CANADA ST, TSC ALLIANCE OF MEXICO, HUNGARIAN FOUNDATION FOR TUBEROUS SCLEROSIS, AND TSC ALLIANCE OF INDIA. THE TSC ALLIANCE RECOGNIZES 14 TSC CLINICS IN GLOBAL ALLIANCE COUNTRIES. PROFESSIONAL EDUCATION EXPANDS PROGRAMS TO TARGET RESEARCHERS AND HEALTHCARE PROVIDERS CARING FOR INDIVIDUALS WITH TSC, MEDICAL STUDENTS, GENETIC COUNSELORS AND EDUCATORS TO MINIMIZE THE CONSEQUENCES OF IGNORANCE AND MISINFORMATION. THE TSC ALLIANCE EXHIBITED AT THE AMERICAN EPILEPSY SOCIETY ANNUAL MEETING. STAFF MEMBERS AND A VOLUNTEER SHARED EDUCATIONAL MATERIALS WITH ATTENDEES WHO VISITED THE BOOTH, AND STAFF PRESENTED DATA AT A POSTER SESSION, ATTENDED SCIENTIFIC SESSIONS, AND HELD MANY MEETINGS WITH ACADEMIC AND INDUSTRY PARTNERS. STAFF ALSO PARTICIPATED IN THE TSC SPECIAL INTEREST GROUP SESSION, AND THE TSC ALLIANCE HOSTED MORE THAN 100 PEOPLE AT A RECEPTION WHICH INCLUDED A VIDEO PRESENTATION OF HOW PEOPLE'S LIVES HAVE BEEN IMPACTED BY TSC, HOW RESEARCH HAS MADE TREMENDOUS IMPACT, AND HOW MUCH IS LEFT TO BE DONE TO CURE, OR FULLY TREAT, TSC.THE TSC ALLIANCE PARTICIPATED IN OR PRESENTED AT 24 PROFESSIONAL MEETINGS IN 2024 INCLUDING RESEARCH AMERICA ANNUAL ADVOCACY AWARDS, AMGEN FUTURE OF UCDS ADVISORY BOARD MEETING, ATS CORPORATE ADVISORY BOARD MEETING, BOSTON CHILDREN'S HOSPITAL TRANSLATIONAL RESEARCH SYMPOSIUM, EAN CONGRESSIONAL BRIEFING, INTERAGENCY COLLABORATIVE TO ADVANCE RESEARCH IN EPILEPSY (ICARE), HEALTH RESEARCH ALLIANCE: CONVENING ON BULLYING AND HARASSMENT FORUM, INFANTILE SPASMS ACTION NETWORK GOVERNANCE MEETING, BRIDGEBIO TOWN HALL, TANDEM MINI SYMPOSIUM, MNK ADVISORY BOARD MEETING, NINDS NONPROFIT FORUM, RARE DISEASE DIVERSITY COALITION, TSCI WORKSHOP, TAND CONSORTIUM, TSC REPRODUCTIVE & PERINATAL TASK FORCE WORKSHOP, CPATH GLOBAL IMPACT CONFERENCE, GLOBAL GENES RARE SUMMIT, BOSTON CHILDREN'S HOSPITAL TRANSLATIONAL RESEARCH SYMPOSIUM, PCORI ANNUAL MEETING, RDCRN FALL MEETING, AES, AND THE MILKEN INSTITUTE FUTURE OF HEALTH SUMMIT.	Desc

Field	Value	IRS element (for citing)
Total Other Prog Srvc Expense	$391,662	TotalOtherProgSrvcExpenseAmt
Total Other Prog Srvc Grant	$5,308	TotalOtherProgSrvcGrantAmt
Total Program Service Expenses	$6,714,704	TotalProgramServiceExpensesAmt
Described In Section501c3	Yes (1)	DescribedInSection501c3Ind
Schedule B Required	Yes (1)	ScheduleBRequiredInd
Political Campaign Acty	0	PoliticalCampaignActyInd
Lobbying Activities	Yes (1)	LobbyingActivitiesInd
Subject To Proxy Tax	0	SubjectToProxyTaxInd
Donor Advised Fund	0	DonorAdvisedFundInd
Conservation Easements	0	ConservationEasementsInd
Collections Of Art	0	CollectionsOfArtInd
Credit Counseling	0	CreditCounselingInd
Donor Rstr Or Quasi Endowments	Yes (1)	DonorRstrOrQuasiEndowmentsInd
Report Land Building Equipment	Yes (1)	ReportLandBuildingEquipmentInd
Report Investments Other Sec	0	ReportInvestmentsOtherSecInd
Report Program Related Invst	0	ReportProgramRelatedInvstInd
Report Other Assets	Yes (1)	ReportOtherAssetsInd
Report Other Liabilities	Yes (1)	ReportOtherLiabilitiesInd
Include FIN48 Footnote	0	IncludeFIN48FootnoteInd
Independent Audit Fincl Stmt	0	IndependentAuditFinclStmtInd
Consolidated Audit Fincl Stmt	Yes (1)	ConsolidatedAuditFinclStmtInd
School Operating	0	SchoolOperatingInd
Foreign Office	0	ForeignOfficeInd
Foreign Activities	Yes (1)	ForeignActivitiesInd
More Than5000 K To Org	Yes (1)	MoreThan5000KToOrgInd
More Than5000 K To Individuals	0	MoreThan5000KToIndividualsInd
Professional Fundraising	0	ProfessionalFundraisingInd
Fundraising Activities	Yes (1)	FundraisingActivitiesInd
Gaming Activities	0	GamingActivitiesInd
Operate Hospital	0	OperateHospitalInd
Grants To Organizations	Yes (1)	GrantsToOrganizationsInd
Grants To Individuals	0	GrantsToIndividualsInd
Schedule J Required	Yes (1)	ScheduleJRequiredInd
Tax Exempt Bonds	0	TaxExemptBondsInd
Engaged In Excess Benefit Trans	0	EngagedInExcessBenefitTransInd
PY Excess Benefit Trans	0	PYExcessBenefitTransInd
Loan Outstanding	0	LoanOutstandingInd
Grant To Related Person	0	GrantToRelatedPersonInd
Business Rln With Org Mem	0	BusinessRlnWithOrgMemInd
Business Rln With Fam Mem	0	BusinessRlnWithFamMemInd
Business Rln With35 Ctrl Ent	0	BusinessRlnWith35CtrlEntInd
Deductible Non Cash Contri	Yes (1)	DeductibleNonCashContriInd
Deductible Art Contribution	0	DeductibleArtContributionInd
Terminate Operations	0	TerminateOperationsInd
Partial Liquidation	0	PartialLiquidationInd
Disregarded Entity	0	DisregardedEntityInd
Related Entity	Yes (1)	RelatedEntityInd
Related Organization Ctrl Ent	0	RelatedOrganizationCtrlEntInd
Trnsfr Exmpt Non Chrtbl Rltd Org	0	TrnsfrExmptNonChrtblRltdOrgInd
Activities Conducted Prtshp	0	ActivitiesConductedPrtshpInd
Schedule O Required	Yes (1)	ScheduleORequiredInd
IRP Document	35	IRPDocumentCnt
IRP Document W2 G	0	IRPDocumentW2GCnt
Backup Wthld Compliance	Yes (1)	BackupWthldComplianceInd
Employee	26	EmployeeCnt
Employment Tax Returns Filed	Yes (1)	EmploymentTaxReturnsFiledInd
Unrelated Bus Incm Over Limit	0	UnrelatedBusIncmOverLimitInd
Foreign Financial Account	0	ForeignFinancialAccountInd
Prohibited Tax Shelter Trans	0	ProhibitedTaxShelterTransInd
Taxable Party Notification	0	TaxablePartyNotificationInd
Nondeductible Contributions	0	NondeductibleContributionsInd
Quid Pro Quo Contributions	Yes (1)	QuidProQuoContributionsInd
Quid Pro Quo Contri Discl	Yes (1)	QuidProQuoContriDisclInd
Form8282 Property Disposed Of	0	Form8282PropertyDisposedOfInd
Rcv Fnds To Pay Prsnl Bnft Cntrct	0	RcvFndsToPayPrsnlBnftCntrctInd
Pay Premiums Prsnl Bnft Cntrct	0	PayPremiumsPrsnlBnftCntrctInd
Indoor Tanning Services	0	IndoorTanningServicesInd
Subj To Tax Rmnrtn Ex Prcht Pymt	0	SubjToTaxRmnrtnExPrchtPymtInd
Subject To Excs Tax Net Invst Inc	0	SubjectToExcsTaxNetInvstIncInd
Info In Schedule O Part VI	Yes (X)	InfoInScheduleOPartVIInd
Governing Body Voting Members	27	GoverningBodyVotingMembersCnt
Independent Voting Member	27	IndependentVotingMemberCnt
Family Or Business Rln	0	FamilyOrBusinessRlnInd
Delegation Of Mgmt Duties	0	DelegationOfMgmtDutiesInd
Change To Org Documents	0	ChangeToOrgDocumentsInd
Material Diversion Or Misuse	0	MaterialDiversionOrMisuseInd
Members Or Stockholders	Yes (1)	MembersOrStockholdersInd
Election Of Board Members	Yes (1)	ElectionOfBoardMembersInd
Decisions Subject To Approva	0	DecisionsSubjectToApprovaInd
Minutes Of Governing Body	Yes (1)	MinutesOfGoverningBodyInd
Minutes Of Committees	Yes (1)	MinutesOfCommitteesInd
Officer Mailing Address	0	OfficerMailingAddressInd
Local Chapters	Yes (1)	LocalChaptersInd
Policies Reference Chapters	Yes (1)	PoliciesReferenceChaptersInd
Form990 Provided To Gvrn Body	Yes (1)	Form990ProvidedToGvrnBodyInd
Conflict Of Interest Policy	Yes (1)	ConflictOfInterestPolicyInd
Annual Disclosure Covered Prsn	Yes (1)	AnnualDisclosureCoveredPrsnInd
Regular Monitoring Enfrc	Yes (1)	RegularMonitoringEnfrcInd
Whistleblower Policy	Yes (1)	WhistleblowerPolicyInd
Document Retention Policy	Yes (1)	DocumentRetentionPolicyInd
Compensation Process CEO	Yes (1)	CompensationProcessCEOInd
Compensation Process Other	Yes (1)	CompensationProcessOtherInd
Investment In Joint Venture	0	InvestmentInJointVentureInd
States Where Copy Of Return Is Fld	AL	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	AR	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	CA	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	FL	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	GA	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	HI	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	IL	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	IN	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	KS	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	KY	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	MD	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	MA	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	MI	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	MN	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	MS	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	NH	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	NJ	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	NM	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	NY	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	NC	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	OR	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	PA	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	RI	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	SC	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	TN	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	UT	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	VA	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	WI	StatesWhereCopyOfReturnIsFldCd
States Where Copy Of Return Is Fld	WV	StatesWhereCopyOfReturnIsFldCd
Own Website	Yes (X)	OwnWebsiteInd
Other Website	Yes (X)	OtherWebsiteInd
Upon Request	Yes (X)	UponRequestInd

Books In Care Of Detail BooksInCareOfDetail

Business Name BusinessName

Field	Value	IRS element (for citing)
Business Name Line1	TSC ALLIANCE	BusinessNameLine1Txt

Field	Value	IRS element (for citing)
Phone	3015629890	PhoneNum

US Address USAddress

Field	Value	IRS element (for citing)
Address Line1	8737 COLESVILLE ROAD 400	AddressLine1Txt
City	SILVER SPRING	CityNm
State Abbreviation	MD	StateAbbreviationCd
ZIP	20910	ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (33 entries)

TitleTitleTxt	Average Hours Per WeekAverageHoursPerWeekRt	Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd	OfficerOfficerInd	Reportable Comp From OrgReportableCompFromOrgAmt	Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt	Other CompensationOtherCompensationAmt	Average Hours Per Week Rltd OrgAverageHoursPerWeekRltdOrgRt	Key EmployeeKeyEmployeeInd	Highest Compensated EmployeeHighestCompensatedEmployeeInd
WILLIAM JOSEPH
BOARD CHAIR	5.00	Yes (X)	Yes (X)	$0	$0	$0
PAUL WAXLAX
VICE CHAIR	5.00	Yes (X)	Yes (X)	$0	$0	$0	1.00
BRITTANY SMITH
TREASURER	5.00	Yes (X)	Yes (X)	$0	$0	$0	1.00
LESLEY HOLMES
SECRETARY	5.00	Yes (X)	Yes (X)	$0	$0	$0
DEREK BAUER
DIRECTOR	2.00	Yes (X)		$0	$0	$0
FRANCES BRIONES
DIRECTOR	2.00	Yes (X)		$0	$0	$0
JULIE BLUM
DIRECTOR	2.00	Yes (X)		$0	$0	$0
MATT BOLGER
DIRECTOR	2.00	Yes (X)		$0	$0	$0
CHIP BURKHALTER
DIRECTOR	2.00	Yes (X)		$0	$0	$0
LISA CARLTON
DIRECTOR	2.00	Yes (X)		$0	$0	$0
MARK CARROLL
DIRECTOR	2.00	Yes (X)		$0	$0	$0
JULIAN GANGOLLI
DIRECTOR	2.00	Yes (X)		$0	$0	$0
TANJALA GIPSON
DIRECTOR	2.00	Yes (X)		$0	$0	$0
JONATHAN GOLDSTEIN
DIRECTOR	2.00	Yes (X)		$0	$0	$0
STEVEN GOLDSTEIN
DIRECTOR	2.00	Yes (X)		$0	$0	$0
SHAFALI JESTE
DIRECTOR	2.00	Yes (X)		$0	$0	$0
JESSICA KREFTING
DIRECTOR	2.00	Yes (X)		$0	$0	$0
DARCY KRUEGER
DIRECTOR	2.00	Yes (X)		$0	$0	$0
PATROSKI LAWSON
DIRECTOR	2.00	Yes (X)		$0	$0	$0
KRISTI LENGYEL
DIRECTOR	2.00	Yes (X)		$0	$0	$0
HEATHER LENS
DIRECTOR	2.00	Yes (X)		$0	$0	$0
LAURA MARKS
DIRECTOR	2.00	Yes (X)		$0	$0	$0
MUSTAFA SAHIN
DIRECTOR	2.00	Yes (X)		$0	$0	$0
SEAN SHILLINGER
DIRECTOR	2.00	Yes (X)		$0	$0	$0
ANDREW SPERLING
DIRECTOR	2.00	Yes (X)		$0	$0	$0
MARK SPOTTS
DIRECTOR	2.00	Yes (X)		$0	$0	$0
VANESSA VAZQUEZ
DIRECTOR	2.00	Yes (X)		$0	$0	$0
KARI LUTHER ROSBECK
PRESIDENT & CEO	54.00		Yes (X)	$229,751	$2,321	$29,822	1.00
CYNTHIA ARCURI
CHIEF FINANCIAL OFFICER	45.00		Yes (X)	$184,176	$9,693	$8,033	1.00
STEVEN ROBERDS
CHIEF SCIENTIFIC OFFICER	45.00			$243,817	$0	$28,877		Yes (X)
DEAN RAGER-AGUIAR
VICE PRESIDENT, TRANSLATIO	45.00			$183,132	$0	$31,118			Yes (X)
LISA MOSS
VICE PRESIDENT, DONOR RELA	45.00			$129,161	$0	$26,747			Yes (X)
JAYE ISHAM
CHIEF OUTREACH OFFICER	45.00			$154,028	$0	$5,930			Yes (X)

Field	Value	IRS element (for citing)
Total Reportable Comp From Org	$1,124,065	TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org	$12,014	TotReportableCompRltdOrgAmt
Total Other Compensation	$130,527	TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K	6	IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed	0	FormerOfcrEmployeesListedInd
Total Comp Greater Than150 K	Yes (1)	TotalCompGreaterThan150KInd
Compensation From Other Srcs	0	CompensationFromOtherSrcsInd

Contractor Compensation ContractorCompensationGrp (3 entries)

Address Line1ContractorAddress/USAddress/AddressLine1Txt	CityContractorAddress/USAddress/CityNm	State AbbreviationContractorAddress/USAddress/StateAbbreviationCd	ZIPContractorAddress/USAddress/ZIPCd	ServicesServicesDesc	CompensationCompensationAmt
PSYCHOGENICS INC
20 GRAMERCY PARK SOUTH	NEW YORK	NY	10003	RESEARCH LAB SERVICES	$2,196,755
VAN ANDEL RESEARCH INSTITUTE
333 BOSTWICK AVE NE	GRAND RAPIDS	MI	49503	RESEARCH LAB SERVICES	$275,408
CAVAROCCHI RUSCIO DENNIS & ASSOCIATES
600 MARYLAND AVE SW SUITE 220 EAST	WASHINGTON	DC	20024	GOVERNMENT RELATIONS	$121,737

Field	Value	IRS element (for citing)
Cntrct Rcvd Greater Than100 K	3	CntrctRcvdGreaterThan100KCnt
Federated Campaigns	$31,703	FederatedCampaignsAmt
Membership Dues	$600	MembershipDuesAmt
Fundraising	$2,545,477	FundraisingAmt
Related Organizations	$239,000	RelatedOrganizationsAmt
All Other Contributions	$4,231,554	AllOtherContributionsAmt
Noncash Contributions	$313,610	NoncashContributionsAmt
Total Contributions	$7,048,334	TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp (2 entries)

DescDesc	BusinessBusinessCd	Total Revenue ColumnTotalRevenueColumnAmt	Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt	ExclusionExclusionAmt
CONTRACT REVENUE	900099	$2,098,994	$2,098,994
CONFERENCE REVENUE	900099	$6,035		$6,035

Field	Value	IRS element (for citing)
Total Program Service Revenue	$2,105,029	TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

Field	Value	IRS element (for citing)
Total Revenue Column	$48,323	TotalRevenueColumnAmt
Exclusion	$48,323	ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

Field	Value	IRS element (for citing)
Securities	$1,484,318	SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

Field	Value	IRS element (for citing)
Securities	$1,479,832	SecuritiesAmt

Gain Or Loss GainOrLossGrp

Field	Value	IRS element (for citing)
Securities	$4,486	SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

Field	Value	IRS element (for citing)
Total Revenue Column	$4,486	TotalRevenueColumnAmt
Exclusion	$4,486	ExclusionAmt

Field	Value	IRS element (for citing)
Fundraising Gross Income	$379,883	FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event	$2,545,477	ContriRptFundraisingEventAmt
Fundraising Direct Expenses	$529,326	FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

Field	Value	IRS element (for citing)
Total Revenue Column	-$149,443	TotalRevenueColumnAmt
Exclusion	-$149,443	ExclusionAmt

Other Revenue Misc OtherRevenueMiscGrp

Field	Value	IRS element (for citing)
Desc	CHANGE IN INTEREST OF AFFILIATE	Desc
Business	900099	BusinessCd
Total Revenue Column	$938,684	TotalRevenueColumnAmt
Exclusion	$938,684	ExclusionAmt

Miscellaneous Revenue MiscellaneousRevenueGrp

Field	Value	IRS element (for citing)
Total Revenue Column	$5,482	TotalRevenueColumnAmt
Exclusion	$5,482	ExclusionAmt

Field	Value	IRS element (for citing)
Other Revenue Total	$944,166	OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

Field	Value	IRS element (for citing)
Total Revenue Column	$10,000,895	TotalRevenueColumnAmt
Related Or Exempt Func Income	$2,098,994	RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue	$0	UnrelatedBusinessRevenueAmt
Exclusion	$853,567	ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

Field	Value	IRS element (for citing)
Total	$594,369	TotalAmt
Program Services	$594,369	ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

Field	Value	IRS element (for citing)
Total	$136,558	TotalAmt
Program Services	$136,558	ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

Field	Value	IRS element (for citing)
Total	$724,475	TotalAmt
Program Services	$452,435	ProgramServicesAmt
Management And General	$105,121	ManagementAndGeneralAmt
Fundraising	$166,919	FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

Field	Value	IRS element (for citing)
Total	$1,953,740	TotalAmt
Program Services	$1,174,594	ProgramServicesAmt
Management And General	$279,508	ManagementAndGeneralAmt
Fundraising	$499,638	FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

Field	Value	IRS element (for citing)
Total	$57,523	TotalAmt
Program Services	$35,779	ProgramServicesAmt
Management And General	$5,835	ManagementAndGeneralAmt
Fundraising	$15,909	FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

Field	Value	IRS element (for citing)
Total	$229,969	TotalAmt
Program Services	$143,107	ProgramServicesAmt
Management And General	$24,484	ManagementAndGeneralAmt
Fundraising	$62,378	FundraisingAmt

Payroll Taxes PayrollTaxesGrp

Field	Value	IRS element (for citing)
Total	$188,177	TotalAmt
Program Services	$117,170	ProgramServicesAmt
Management And General	$21,250	ManagementAndGeneralAmt
Fundraising	$49,757	FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

Field	Value	IRS element (for citing)
Total	$29,766	TotalAmt
Program Services	$20,071	ProgramServicesAmt
Management And General	$2,797	ManagementAndGeneralAmt
Fundraising	$6,898	FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

Field	Value	IRS element (for citing)
Total	$23,775	TotalAmt
Program Services	$16,031	ProgramServicesAmt
Management And General	$2,234	ManagementAndGeneralAmt
Fundraising	$5,510	FundraisingAmt

Fees For Services Lobbying FeesForServicesLobbyingGrp

Field	Value	IRS element (for citing)
Total	$119,856	TotalAmt
Program Services	$80,816	ProgramServicesAmt
Management And General	$11,264	ManagementAndGeneralAmt
Fundraising	$27,776	FundraisingAmt

Fees For Services Other FeesForServicesOtherGrp

Field	Value	IRS element (for citing)
Total	$282,498	TotalAmt
Program Services	$185,960	ProgramServicesAmt
Management And General	$27,854	ManagementAndGeneralAmt
Fundraising	$68,684	FundraisingAmt

Advertising AdvertisingGrp

Field	Value	IRS element (for citing)
Total	$16,311	TotalAmt
Program Services	$7,480	ProgramServicesAmt
Management And General	$133	ManagementAndGeneralAmt
Fundraising	$8,698	FundraisingAmt

Office Expenses OfficeExpensesGrp

Field	Value	IRS element (for citing)
Total	$363,869	TotalAmt
Program Services	$151,657	ProgramServicesAmt
Management And General	$14,085	ManagementAndGeneralAmt
Fundraising	$198,127	FundraisingAmt

Information Technology InformationTechnologyGrp

Field	Value	IRS element (for citing)
Total	$162,481	TotalAmt
Program Services	$73,818	ProgramServicesAmt
Management And General	$17,754	ManagementAndGeneralAmt
Fundraising	$70,909	FundraisingAmt

Occupancy OccupancyGrp

Field	Value	IRS element (for citing)
Total	$189,963	TotalAmt
Program Services	$116,454	ProgramServicesAmt
Management And General	$20,733	ManagementAndGeneralAmt
Fundraising	$52,776	FundraisingAmt

Travel TravelGrp

Field	Value	IRS element (for citing)
Total	$316,059	TotalAmt
Program Services	$239,428	ProgramServicesAmt
Management And General	$8,366	ManagementAndGeneralAmt
Fundraising	$68,265	FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

Field	Value	IRS element (for citing)
Total	$371,834	TotalAmt
Program Services	$322,368	ProgramServicesAmt
Management And General	$32,160	ManagementAndGeneralAmt
Fundraising	$17,306	FundraisingAmt

Depreciation Depletion DepreciationDepletionGrp

Field	Value	IRS element (for citing)
Total	$73,012	TotalAmt
Program Services	$55,807	ProgramServicesAmt
Management And General	$4,905	ManagementAndGeneralAmt
Fundraising	$12,300	FundraisingAmt

Insurance InsuranceGrp

Field	Value	IRS element (for citing)
Total	$17,889	TotalAmt
Program Services	$10,985	ProgramServicesAmt
Management And General	$5,285	ManagementAndGeneralAmt
Fundraising	$1,619	FundraisingAmt

Other Expenses OtherExpensesGrp (3 entries)

DescDesc	TotalTotalAmt	Program ServicesProgramServicesAmt	Management And GeneralManagementAndGeneralAmt	FundraisingFundraisingAmt
PRECLINICAL CONSORTIUM	$2,287,598	$2,287,598
NHD BIOSAMPLE REPOSIT	$456,639	$456,639
DUES AND SUBSCRIPTIONS	$34,570	$12,249	$12,943	$9,378

All Other Expenses AllOtherExpensesGrp

Field	Value	IRS element (for citing)
Total	$29,087	TotalAmt
Program Services	$23,331	ProgramServicesAmt
Management And General	$401	ManagementAndGeneralAmt
Fundraising	$5,355	FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

Field	Value	IRS element (for citing)
Total	$8,660,018	TotalAmt
Program Services	$6,714,704	ProgramServicesAmt
Management And General	$597,112	ManagementAndGeneralAmt
Fundraising	$1,348,202	FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

Field	Value	IRS element (for citing)
BOY	$1,487,710	BOYAmt
EOY	$3,485,780	EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

Field	Value	IRS element (for citing)
BOY	$700,650	BOYAmt
EOY	$706,764	EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

Field	Value	IRS element (for citing)
BOY	$4,306,013	BOYAmt
EOY	$2,754,156	EOYAmt

Accounts Receivable AccountsReceivableGrp

Field	Value	IRS element (for citing)
BOY	$350,534	BOYAmt
EOY	$119,421	EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

Field	Value	IRS element (for citing)
BOY	$283,821	BOYAmt
EOY	$337,110	EOYAmt

Field	Value	IRS element (for citing)
Land Bldg Equip Cost Or Other Bss	$1,124,880	LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec	$490,322	LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

Field	Value	IRS element (for citing)
BOY	$393,961	BOYAmt
EOY	$634,558	EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

Field	Value	IRS element (for citing)
BOY	$1,752,986	BOYAmt
EOY	$1,298,765	EOYAmt

Other Assets Total OtherAssetsTotalGrp

Field	Value	IRS element (for citing)
BOY	$6,810,093	BOYAmt
EOY	$7,918,147	EOYAmt

Total Assets TotalAssetsGrp

Field	Value	IRS element (for citing)
BOY	$16,085,768	BOYAmt
EOY	$17,254,701	EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

Field	Value	IRS element (for citing)
BOY	$813,246	BOYAmt
EOY	$725,038	EOYAmt

Deferred Revenue DeferredRevenueGrp

Field	Value	IRS element (for citing)
BOY	$189,493	BOYAmt
EOY	$194,359	EOYAmt

Other Liabilities OtherLiabilitiesGrp

Field	Value	IRS element (for citing)
BOY	$1,085,681	BOYAmt
EOY	$969,191	EOYAmt

Total Liabilities TotalLiabilitiesGrp

Field	Value	IRS element (for citing)
BOY	$2,088,420	BOYAmt
EOY	$1,888,588	EOYAmt

Field	Value	IRS element (for citing)
Organization Follows FASB117	Yes (X)	OrganizationFollowsFASB117Ind

No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp

Field	Value	IRS element (for citing)
BOY	$6,372,958	BOYAmt
EOY	$7,971,055	EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

Field	Value	IRS element (for citing)
BOY	$7,624,390	BOYAmt
EOY	$7,395,058	EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

Field	Value	IRS element (for citing)
BOY	$13,997,348	BOYAmt
EOY	$15,366,113	EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

Field	Value	IRS element (for citing)
BOY	$16,085,768	BOYAmt
EOY	$17,254,701	EOYAmt

Field	Value	IRS element (for citing)
Reconcilation Revenue Expnss	$1,340,877	ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst	$27,888	NetUnrlzdGainsLossesInvstAmt
Other Changes In Net Assets	$0	OtherChangesInNetAssetsAmt
Info In Schedule O Part XII	Yes (X)	InfoInScheduleOPartXIIInd
Method Of Accounting Accrual	Yes (X)	MethodOfAccountingAccrualInd
Accountant Compile Or Review	0	AccountantCompileOrReviewInd
FS Audited	Yes (1)	FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

Field	Value	IRS element (for citing)
Consolidated Basis Fincl Stmt	Yes (X)	ConsolidatedBasisFinclStmtInd

Field	Value	IRS element (for citing)
Audit Committee	Yes (1)	AuditCommitteeInd
Federal Grant Audit Required	0	FederalGrantAuditRequiredInd

Schedule A IRS990ScheduleA

Field	Value	IRS element (for citing)
Public Organization170	Yes (X)	PublicOrganization170Ind

Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp

Field	Value	IRS element (for citing)
Current Tax Year Minus4 Years	$4,345,011	CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years	$5,769,053	CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years	$7,016,851	CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year	$6,496,698	CurrentTaxYearMinus1YearAmt
Current Tax Year	$6,734,724	CurrentTaxYearAmt
Total	$30,362,337	TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

Field	Value	IRS element (for citing)
Current Tax Year Minus4 Years	$4,345,011	CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years	$5,769,053	CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years	$7,016,851	CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year	$6,496,698	CurrentTaxYearMinus1YearAmt
Current Tax Year	$6,734,724	CurrentTaxYearAmt
Total	$30,362,337	TotalAmt

Field	Value	IRS element (for citing)
Substantial Contributors Tot	$5,015,227	SubstantialContributorsTotAmt
Public Support Total170	$25,347,110	PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

Field	Value	IRS element (for citing)
Current Tax Year Minus4 Years	$11,188	CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years	$3,809	CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years	$2,382	CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year	$36,732	CurrentTaxYearMinus1YearAmt
Current Tax Year	$52,809	CurrentTaxYearAmt
Total	$106,920	TotalAmt

Other Income170 OtherIncome170Grp

Field	Value	IRS element (for citing)
Current Tax Year Minus2 Years	$15,492	CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year	$995	CurrentTaxYearMinus1YearAmt
Current Tax Year	$5,482	CurrentTaxYearAmt
Total	$21,969	TotalAmt

Field	Value	IRS element (for citing)
Total Support	$30,491,226	TotalSupportAmt
Gross Receipts Rltd Activities	$11,955,636	GrossReceiptsRltdActivitiesAmt
Public Support CY170	0.83130	PublicSupportCY170Pct
Public Support PY170	0.83480	PublicSupportPY170Pct
Thirty Thr Pct Suprt Tests CY170	Yes (X)	ThirtyThrPctSuprtTestsCY170Ind

Schedule B IRS990ScheduleB

Contributor Information ContributorInformationGrp

Field	Value	IRS element (for citing)
Contributor	RESTRICTED	ContributorNum

Contributor Business Name ContributorBusinessName

Field	Value	IRS element (for citing)
Business Name Line1	RESTRICTED	BusinessNameLine1

Contributor US Address ContributorUSAddress

Field	Value	IRS element (for citing)
Address Line1	RESTRICTED	AddressLine1
Address Line2	RESTRICTED	AddressLine2
City	RESTRICTED	City
State	RESTRICTED	State
ZIP Code	RESTRICTED	ZIPCode

Field	Value	IRS element (for citing)
Total Contributions	RESTRICTED	TotalContributionsAmt

Schedule C IRS990ScheduleC

Total Grassroots Lobbying TotalGrassrootsLobbyingGrp

Field	Value	IRS element (for citing)
Filing Organizations Total	$4,886	FilingOrganizationsTotalAmt

Total Direct Lobbying TotalDirectLobbyingGrp

Field	Value	IRS element (for citing)
Filing Organizations Total	$234,707	FilingOrganizationsTotalAmt

Total Lobbying Expend TotalLobbyingExpendGrp

Field	Value	IRS element (for citing)
Filing Organizations Total	$239,593	FilingOrganizationsTotalAmt

Other Exempt Purpose Expend OtherExemptPurposeExpendGrp

Field	Value	IRS element (for citing)
Filing Organizations Total	$7,086,111	FilingOrganizationsTotalAmt

Total Exempt Purpose Expend TotalExemptPurposeExpendGrp

Field	Value	IRS element (for citing)
Filing Organizations Total	$7,325,704	FilingOrganizationsTotalAmt

Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp

Field	Value	IRS element (for citing)
Filing Organizations Total	$516,285	FilingOrganizationsTotalAmt

Grassroots Nontaxable GrassrootsNontaxableGrp

Field	Value	IRS element (for citing)
Filing Organizations Total	$129,071	FilingOrganizationsTotalAmt

Tot Lbbyng Grassroot Mns Non Tx TotLbbyngGrassrootMnsNonTxGrp

Field	Value	IRS element (for citing)
Filing Organizations Total	$0	FilingOrganizationsTotalAmt

Tot Lbby Expend Mns Lbbyng Non Tx TotLbbyExpendMnsLbbyngNonTxGrp

Field	Value	IRS element (for citing)
Filing Organizations Total	$0	FilingOrganizationsTotalAmt

Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp

Field	Value	IRS element (for citing)
Current Year Minus3	$497,465	CurrentYearMinus3Amt
Current Year Minus2	$550,968	CurrentYearMinus2Amt
Current Year Minus1	$515,868	CurrentYearMinus1Amt
Current Year	$516,285	CurrentYearAmt
Total	$2,080,586	TotalAmt

Field	Value	IRS element (for citing)
Lobbying Ceiling	$3,120,879	LobbyingCeilingAmt

Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp

Field	Value	IRS element (for citing)
Current Year Minus3	$154,139	CurrentYearMinus3Amt
Current Year Minus2	$162,771	CurrentYearMinus2Amt
Current Year Minus1	$188,741	CurrentYearMinus1Amt
Current Year	$239,593	CurrentYearAmt
Total	$745,244	TotalAmt

Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp

Field	Value	IRS element (for citing)
Current Year Minus3	$124,366	CurrentYearMinus3Amt
Current Year Minus2	$137,742	CurrentYearMinus2Amt
Current Year Minus1	$128,967	CurrentYearMinus1Amt
Current Year	$129,071	CurrentYearAmt
Total	$520,146	TotalAmt

Field	Value	IRS element (for citing)
Grassroots Ceiling	$780,219	GrassrootsCeilingAmt

Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp

Field	Value	IRS element (for citing)
Current Year Minus3	$1,127	CurrentYearMinus3Amt
Current Year Minus2	$1,395	CurrentYearMinus2Amt
Current Year Minus1	$1,345	CurrentYearMinus1Amt
Current Year	$4,886	CurrentYearAmt
Total	$8,753	TotalAmt

Schedule D IRS990ScheduleD

CY Endwmt Fund CYEndwmtFundGrp

Field	Value	IRS element (for citing)
Beginning Year Balance	$5,821,187	BeginningYearBalanceAmt
Contributions	$554,586	ContributionsAmt
Investment Earnings Or Losses	$671,714	InvestmentEarningsOrLossesAmt
Other Expenditures	$239,000	OtherExpendituresAmt
Administrative Expenses	$48,616	AdministrativeExpensesAmt
End Year Balance	$6,759,871	EndYearBalanceAmt

CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp

Field	Value	IRS element (for citing)
Beginning Year Balance	$5,500,387	BeginningYearBalanceAmt
Contributions	$141,816	ContributionsAmt
Investment Earnings Or Losses	$812,509	InvestmentEarningsOrLossesAmt
Other Expenditures	$572,625	OtherExpendituresAmt
Administrative Expenses	$60,900	AdministrativeExpensesAmt
End Year Balance	$5,821,187	EndYearBalanceAmt

CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp

Field	Value	IRS element (for citing)
Beginning Year Balance	$6,711,748	BeginningYearBalanceAmt
Contributions	$68,423	ContributionsAmt
Investment Earnings Or Losses	-$860,036	InvestmentEarningsOrLossesAmt
Other Expenditures	$238,000	OtherExpendituresAmt
Administrative Expenses	$181,748	AdministrativeExpensesAmt
End Year Balance	$5,500,387	EndYearBalanceAmt

CY Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp

Field	Value	IRS element (for citing)
Beginning Year Balance	$5,893,521	BeginningYearBalanceAmt
Contributions	$132,476	ContributionsAmt
Investment Earnings Or Losses	$1,053,588	InvestmentEarningsOrLossesAmt
Other Expenditures	$333,813	OtherExpendituresAmt
Administrative Expenses	$34,024	AdministrativeExpensesAmt
End Year Balance	$6,711,748	EndYearBalanceAmt

CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp

Field	Value	IRS element (for citing)
Beginning Year Balance	$5,915,805	BeginningYearBalanceAmt
Contributions	$54,645	ContributionsAmt
Investment Earnings Or Losses	$416,431	InvestmentEarningsOrLossesAmt
Other Expenditures	$463,721	OtherExpendituresAmt
Administrative Expenses	$29,639	AdministrativeExpensesAmt
End Year Balance	$5,893,521	EndYearBalanceAmt

Field	Value	IRS element (for citing)
Board Designated Balance EOY	0.84870	BoardDesignatedBalanceEOYPct
Prmnnt Endowment Balance EOY	0.14580	PrmnntEndowmentBalanceEOYPct
Term Endowment Balance EOY	0.00550	TermEndowmentBalanceEOYPct
Endowments Held Unrelated Org	0	EndowmentsHeldUnrelatedOrgInd
Endowments Held Related Org	Yes (1)	EndowmentsHeldRelatedOrgInd
Related Org List Sch R	Yes (1)	RelatedOrgListSchRInd

Leasehold Improvements LeaseholdImprovementsGrp

Field	Value	IRS element (for citing)
Other Cost Or Other Basis	$449,272	OtherCostOrOtherBasisAmt
Depreciation	$194,003	DepreciationAmt
Book Value	$255,269	BookValueAmt

Equipment EquipmentGrp

Field	Value	IRS element (for citing)
Other Cost Or Other Basis	$595,336	OtherCostOrOtherBasisAmt
Depreciation	$216,047	DepreciationAmt
Book Value	$379,289	BookValueAmt

Other Land Buildings OtherLandBuildingsGrp

Field	Value	IRS element (for citing)
Other Cost Or Other Basis	$80,272	OtherCostOrOtherBasisAmt
Depreciation	$80,272	DepreciationAmt
Book Value	$0	BookValueAmt

Field	Value	IRS element (for citing)
Total Book Value Land Buildings	$634,558	TotalBookValueLandBuildingsAmt

Other Assets Org OtherAssetsOrgGrp (3 entries)

DescDesc	Book ValueBookValueAmt
NET ASSETS OF AFFILIATE	$6,759,871
OPERATING LEASE RIGHT-OF-USE ASSET	$584,651
DUE FROM AFFILIATE	$573,625

Field	Value	IRS element (for citing)
Total Book Value Other Assets	$7,918,147	TotalBookValueOtherAssetsAmt

Other Liabilities Org OtherLiabilitiesOrgGrp (2 entries)

DescDesc	AmtAmt
OPERATING LEASE LIABILITY	$970,571
DUE FROM RELATED PARTY	-$1,380

Field	Value	IRS element (for citing)
Total Liability	$969,191	TotalLiabilityAmt
Total Rev Etc Audited Fincl Stmt	$10,052,325	TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst	$27,888	NetUnrealizedGainsInvstAmt
Donated Services And Use Fclts	$23,542	DonatedServicesAndUseFcltsAmt
Revenue Not Reported	$51,430	RevenueNotReportedAmt
Revenue Subtotal	$10,000,895	RevenueSubtotalAmt
Revenue Not Reported Fincl Stmt	$0	RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990	$10,000,895	TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt	$8,683,560	TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts	$23,542	DonatedServicesUseFcltsAmt
Expenses Not Reported	$23,542	ExpensesNotReportedAmt
Expenses Subtotal	$8,660,018	ExpensesSubtotalAmt
Expenses Not Rpt Fincl Stmt	$0	ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990	$8,660,018	TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail

Field	Value	IRS element (for citing)
Form And Line Reference	PART V, LINE 4:	FormAndLineReferenceDesc
Explanation	THE ALLIANCE'S ENDOWMENTS CONSIST OF TWO FUNDS ESTABLISHED FOR DIFFERENT PURPOSES. THE ALLIANCE'S ENDOWMENTS INCLUDE ONE TRADITIONAL DONOR-RESTRICTED ENDOWMENT FUND AND ONE BOARD-DESIGNATED ENDOWMENT FUND. THE BOARD-DESIGNATED ENDOWMENT FUND SOLELY CONSISTS OF THE ENDOWMENT FUND'S UNRESTRICTED NET ASSET BALANCE.	ExplanationTxt

Schedule F IRS990ScheduleF

Field	Value	IRS element (for citing)
Grant Records Maintained	Yes (1)	GrantRecordsMaintainedInd

Account Activities Outside US AccountActivitiesOutsideUSGrp (2 entries)

RegionRegionTxt	OfficesOfficesCnt	EmployeeEmployeeCnt	Type Of Activities ConductedTypeOfActivitiesConductedTxt	Region Total ExpendituresRegionTotalExpendituresAmt
EUROPE (INCLUDING ICELAND AND GREENLAND)	2	0	GRANTS TO RECIPIENTS LOCATED IN THE REGION	$131,250
SOUTH ASIA	1	0	GRANTS TO RECIPIENTS LOCATED IN THE REGION	$5,308

Field	Value	IRS element (for citing)
Subtotal Offices	3	SubtotalOfficesCnt
Subtotal Employees	0	SubtotalEmployeesCnt
Continuation Total Office	0	ContinuationTotalOfficeCnt
Continuation Total Employee	0	ContinuationTotalEmployeeCnt
Total Office	3	TotalOfficeCnt
Total Employee	0	TotalEmployeeCnt
Subtotal Spent	$136,558	SubtotalSpentAmt
Continuation Spent	$0	ContinuationSpentAmt
Total Spent	$136,558	TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (3 entries)

RegionRegionTxt	Purpose Of GrantPurposeOfGrantTxt	Cash GrantCashGrantAmt	Manner Of Cash DisbursementMannerOfCashDisbursementTxt	Non Cash AssistanceNonCashAssistanceAmt
EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM	RESEARCH ON TUBEROUS SCLEROSIS COMPLEX	$75,000	WIRE TRANSFER	$0
EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM	RESEARCH ON TUBEROUS SCLEROSIS COMPLEX	$56,250	WIRE TRANSFER	$0
SOUTH ASIA	TO COVER COSTS OF CLOSING THE TSC GLOBAL ALLIANCE	$5,308	WIRE TRANSFER	$0

Field	Value	IRS element (for citing)
Total Other Org	3	TotalOtherOrgCnt
Transfer To Foreign Corp	0	TransferToForeignCorpInd
Interest In Foreign Trust	0	InterestInForeignTrustInd
Foreign Corp Ownership	0	ForeignCorpOwnershipInd
Passive Foreign Investmest Co	0	PassiveForeignInvestmestCoInd
Foreign Partnership	0	ForeignPartnershipInd
Boycott Countries	0	BoycottCountriesInd

Supplemental Information Detail SupplementalInformationDetail

Field	Value	IRS element (for citing)
Form And Line Reference	PART I, LINE 2:	FormAndLineReferenceDesc
Explanation	GRANTEE ORGANIZATIONS ARE EXPECTED TO FILE ANNUAL PROGRESS REPORTS TO OUTLINED GRANT GOALS AND MILESTONES. THESE REPORTS ARE REVIEWED BY A COMMITTEE OF PEERS. THIS COMMITTEE MAKES DETERMINATIONS BASED ON QUALITY OF WORK TO GOALS AND IF THE GRANTEE WILL CONTINUE TO RECEIVE FUNDING. A FINAL WRITTEN AND FINANCIAL REPORT IS REQUIRED OF ALL GRANTEES.	ExplanationTxt

Schedule G IRS990ScheduleG

Fundraising Event Information FundraisingEventInformationGrp

Field	Value	IRS element (for citing)
Event1	STEP FORWARD TO CURE TSC	Event1Nm
Gross Receipts Event1	$781,985	GrossReceiptsEvent1Amt
Charitable Contri Event1	$781,985	CharitableContriEvent1Amt
Non Cash Prizes Event1	$21,874	NonCashPrizesEvent1Amt
Rent Facility Costs Event1	$7,438	RentFacilityCostsEvent1Amt
Food And Beverage Event1	$11,301	FoodAndBeverageEvent1Amt
Entertainment Event1	$8,952	EntertainmentEvent1Amt
Event2	50TH ANNIVERSARY GALA	Event2Nm
Gross Receipts Event2	$1,525,220	GrossReceiptsEvent2Amt
Charitable Contri Event2	$1,231,266	CharitableContriEvent2Amt
Gross Revenue Event2	$293,954	GrossRevenueEvent2Amt
Non Cash Prizes Event2	$30,000	NonCashPrizesEvent2Amt
Rent Facility Costs Event2	$131,920	RentFacilityCostsEvent2Amt
Food And Beverage Event2	$188,715	FoodAndBeverageEvent2Amt
Other Events Total	8	OtherEventsTotalCnt
Gross Receipts Other Events	$618,155	GrossReceiptsOtherEventsAmt
Charitable Contri Other Events	$532,226	CharitableContriOtherEventsAmt
Gross Revenue Other Events	$85,929	GrossRevenueOtherEventsAmt
Non Cash Prizes Other Events	$5,672	NonCashPrizesOtherEventsAmt
Rent Fclty Costs Other Events	$57,174	RentFcltyCostsOtherEventsAmt
Food And Beverage Other Events	$65,163	FoodAndBeverageOtherEventsAmt
Entertainment Other Events	$1,117	EntertainmentOtherEventsAmt
Gross Receipts Total	$2,925,360	GrossReceiptsTotalAmt
Charitable Contributions Tot	$2,545,477	CharitableContributionsTotAmt
Gross Revenue Total Events	$379,883	GrossRevenueTotalEventsAmt
Non Cash Prizes Total Events	$57,546	NonCashPrizesTotalEventsAmt
Rent Fclty Costs Total Events	$196,532	RentFcltyCostsTotalEventsAmt
Food And Beverage Total Events	$265,179	FoodAndBeverageTotalEventsAmt
Entertainment Total Events	$10,069	EntertainmentTotalEventsAmt
Direct Expense Summary Events	$529,326	DirectExpenseSummaryEventsAmt
Net Income Summary	-$149,443	NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

Field	Value	IRS element (for citing)
Grant Records Maintained	Yes (1)	GrantRecordsMaintainedInd

Recipient Table RecipientTable (9 entries)

Address Line1USAddress/AddressLine1Txt	CityUSAddress/CityNm	State AbbreviationUSAddress/StateAbbreviationCd	ZIPUSAddress/ZIPCd	Recipient EINRecipientEIN	IRC SectionIRCSectionDesc	Cash GrantCashGrantAmt	Non Cash AssistanceNonCashAssistanceAmt	Purpose Of GrantPurposeOfGrantTxt	Address Line2USAddress/AddressLine2Txt
BAYLOR COLLEGE OF MEDICINE
PO BOX 301207	DALLAS	TX	70690	741613878	501(C)(3)	$75,000	$0	RESEARCH GRANT
EMORY UNIVERSITY
PO BOX 935084	ATLANTA	GA	31193	580566256	501(C)(3)	$18,750	$0	RESEARCH GRANT
NORTHWESTERN UNIVERSITY
633 CLARK ST ROOM G547	EVANSTON	IL	60208	362167817	501(C)(3)	$18,750	$0	RESEARCH GRANT
COLUMBIA UNIVERSITY IN THE CITY OF NEW YORK
615 W 131ST STREET 6TH FLOOR MAIL	NEW YORK	NY	10027	135598093	501(C)(3)	$56,250	$0	RESEARCH GRANT	CODE 8725
UNIVERSITY OF CALIFORNIA IRVINE
228 ALDRICH HALL	IRVINE	CA	92697	952226406	501(C)(3)	$75,000	$0	RESEARCH GRANT
UNIVERSITY OF MASSACHUSETTS
55 LAKE AVENUE NORTH SUITE S1-859	WORCESTER	MA	01655	542084125	501(C)(3)	$18,750	$0	RESEARCH GRANT
UNIVERSITY OF TEXAS DALLAS
800 WEST CAMPBEL ROAD SP2 27	RICHARDSON	TX	75080	751305566	501(C)(3)	$75,000	$0	RESEARCH GRANT
NATIONAL ORGANIZATION FOR RARE DISORDERS
DEPT 5430 PO BOX 4110	WOBURN	MA	01888	133223946	501(C)(3)	$175,000	$0	TSC TRAVEL AND LODGING ASSISTANCE PROGRAM
BOSTON CHILDREN'S HOSPITAL
PO BOX 414413	BOSTON	MA	02241	042774441	501(C)(3)	$81,869	$0	RESEARCH GRANT

Field	Value	IRS element (for citing)
Total501c3 Org	9	Total501c3OrgCnt
Total Other Org	0	TotalOtherOrgCnt

Supplemental Information Detail SupplementalInformationDetail

Field	Value	IRS element (for citing)
Form And Line Reference	PART I, LINE 2:	FormAndLineReferenceDesc
Explanation	THE TSC ALLIANCE HAS FUNDED $39 MILLION IN RESEARCH ON TSC SINCE 1984. DIRECTED BY STEVEN L. ROBERDS, PH.D, CHIEF SCIENTIFIC OFFICER, THE TSC ALLIANCE RESEARCH GRANTS PROGRAM FUNDS RESEARCH FOCUSED ON TSC WITH PRIORITIES SET BY THE RESEARCHERS TOGETHER WITH THE TSC ALLIANCE. COLLABORATIONS BETWEEN BASIC AND CLINICAL RESEARCHERS ARE ENCOURAGED AND FOSTERED, AND THE TSC ALLIANCE IS WORKING TO INCREASE FUNDING FOR RESEARCH ON TSC. THROUGH THE TSC ALLIANCE RESEARCH GRANTS PROGRAM, APPLICATIONS CAN BE SUBMITTED FOR POSTDOCTORAL FELLOWSHIPS AND TSC RESEARCH GRANTS. GRANTS ARE REVIEWED IN A THREE-STEP PROCESS: 1. A GRANT REVIEW COMMITTEE COMPOSED OF INDIVIDUALS KNOWLEDGEABLE ABOUT THE CLINICAL AND BASIC COMPONENTS OF TSC AS WELL AS CONSUMERS REVIEW ALL GRANT APPLICATIONS FOR SCIENTIFIC MERITS, RELEVANCY TO THE FUNDING PRIORITIES OF THE ORGANIZATION AND WITH A FOCUS ON UNDERSTANDING THE MECHANISMS OF TSC AND/OR THE DEVELOPMENT OF TREATMENTS AND THERAPIES FOR THE MANIFESTATIONS OF THE DISEASE. 2. THE SCIENCE AND MEDICAL COMMITTEE OF THE BOARD OF DIRECTORS THEN REVIEWS THE GRANT REVIEW COMMITTEE'S CONCLUSIONS AND MAKES FUNDING RECOMMENDATIONS TO THE BOARD OF DIRECTORS. 3. THE BOARD OF DIRECTORS THEN REVIEWS THE RECOMMENDATIONS OF THE SCIENCE AND MEDICAL COMMITTEE AND MAKES FINAL APPROVAL FOR THE FUNDING OF GRANTS.	ExplanationTxt

Schedule J IRS990ScheduleJ

Field	Value	IRS element (for citing)
Compensation Committee	Yes (X)	CompensationCommitteeInd
Form990 Of Other Organizations	Yes (X)	Form990OfOtherOrganizationsInd
Compensation Survey	Yes (X)	CompensationSurveyInd
Board Or Committee Approval	Yes (X)	BoardOrCommitteeApprovalInd
Severance Payment	0	SeverancePaymentInd
Supplemental Nonqual Rtr Plan	0	SupplementalNonqualRtrPlanInd
Equity Based Comp Arrngm	0	EquityBasedCompArrngmInd
Comp Based On Revenue Of Flng Org	Yes (1)	CompBasedOnRevenueOfFlngOrgInd
Comp Bsd On Rev Related Orgs	0	CompBsdOnRevRelatedOrgsInd
Comp Bsd Net Earns Flng Org	Yes (1)	CompBsdNetEarnsFlngOrgInd
Comp Bsd Net Earns Rltd Orgs	0	CompBsdNetEarnsRltdOrgsInd
Any Non Fixed Payments	0	AnyNonFixedPaymentsInd
Initial Contract Exception	0	InitialContractExceptionInd

Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (6 entries)

TitleTitleTxt	Base Compensation Filing OrgBaseCompensationFilingOrgAmt	Compensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmt	Bonus Filing OrganizationBonusFilingOrganizationAmount	Bonus Related OrganizationsBonusRelatedOrganizationsAmt	Other Compensation Filing OrgOtherCompensationFilingOrgAmt	Other Compensation Rltd OrgsOtherCompensationRltdOrgsAmt	Deferred Compensation Flng OrgDeferredCompensationFlngOrgAmt	Deferred Comp Rltd OrgsDeferredCompRltdOrgsAmt	Nontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmt	Nontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmt	Total Compensation Filing OrgTotalCompensationFilingOrgAmt	Total Compensation Rltd OrgsTotalCompensationRltdOrgsAmt	Comp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmt	Comp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt
STEVEN ROBERDS
CHIEF SCIENTIFIC OFFICER	$221,251	$0	$22,566	$0	$0	$0	$7,509	$0	$21,368	$0	$272,694	$0	$0	$0
KARI LUTHER ROSBECK
PRESIDENT & CEO	$207,898	$2,100	$21,853	$221	$0	$0	$7,220	$0	$22,602	$0	$259,573	$2,321	$0	$0
DEAN RAGER-AGUIAR
VICE PRESIDENT, TRANSLATIO	$163,575	$0	$19,557	$0	$0	$0	$5,863	$0	$25,255	$0	$214,250	$0	$0	$0
CYNTHIA ARCURI
CHIEF FINANCIAL OFFICER	$166,658	$8,771	$17,518	$922	$0	$0	$5,814	$0	$2,219	$0	$192,209	$9,693	$0	$0
JAYE ISHAM
CHIEF OUTREACH OFFICER	$140,182	$0	$13,846	$0	$0	$0	$4,609	$0	$1,321	$0	$159,958	$0	$0	$0
LISA MOSS
VICE PRESIDENT, DONOR RELA	$116,082	$0	$13,079	$0	$0	$0	$4,178	$0	$22,569	$0	$155,908	$0	$0	$0

Supplemental Information Detail SupplementalInformationDetail (2 entries)

Form And Line ReferenceFormAndLineReferenceDesc	ExplanationExplanationTxt
PART I, LINE 5	KARI LUTHER ROSBECK, STEVE ROBERDS, CYNTHIA ARCURI, DEAN AGUIAR, JAYE ISHAM, AND LISA MOSS, ALL HAVE INCENTIVE COMPENSATION EQUAL TO A PERCENTAGE OF THEIR SALARIES BASED ON KEY PERFORMANCE OBJECTIVES AS ESTABLISHED BY THEIR COMPENSATION COMMITTEE.
PART I, LINE 6	KARI LUTHER ROSBECK, STEVE ROBERDS, CYNTHIA ARCURI, DEAN AGUIAR, JAYE ISHAM, AND LISA MOSS ALL HAVE INCENTIVE COMPENSATION EQUAL TO A PERCENTAGE OF THEIR SALARIES BASED ON KEY PERFORMANCE OBJECTIVES AS ESTABLISHED BY THEIR COMPENSATION COMMITTEE.

Schedule M IRS990ScheduleM

Other Non Cash Contri Table OtherNonCashContriTableGrp

Field	Value	IRS element (for citing)
Non Cash Checkbox	Yes (X)	NonCashCheckboxInd
Desc	MEDICAL EQUIPMENTS	Desc
Contribution	4	ContributionCnt
Noncash Contributions Rpt F990	$313,610	NoncashContributionsRptF990Amt
Method Of Determining Revenues	FMV	MethodOfDeterminingRevenuesTxt

Field	Value	IRS element (for citing)
Any Property That Must Be Held	0	AnyPropertyThatMustBeHeldInd
Review Process Unusual NC Gifts	0	ReviewProcessUnusualNCGiftsInd
Third Parties Used	0	ThirdPartiesUsedInd

Supplemental Information Detail SupplementalInformationDetail

Field	Value	IRS element (for citing)
Form And Line Reference	PART I, COLUMN (B):	FormAndLineReferenceDesc
Explanation	AMOUNT REPORTED IS THE NUMBER OF ITEMS CONTRIBUTED.	ExplanationTxt

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (10 entries)

Form And Line ReferenceFormAndLineReferenceDesc	ExplanationExplanationTxt
FORM 990, PART III, LINE 4A, DESCRIPTION OF PROGRAM SERVICE:	THERE IS NATURAL TURNOVER OF INDUSTRY MEMBERSHIP, PRINCIPALLY DRIVEN BY RESEARCH DATA GENERATED BY TESTING THEIR DRUGS. DUE TO INTELLECTUAL PROPERTY CONSIDERATIONS, MOST COMPANIES FULLY FUND THEIR STUDIES THROUGH THE TSC ALLIANCE, WHICH ALLOWS THE COMPANY TO KEEP ITS DATA CONFIDENTIAL. THESE CONFIDENTIAL STUDIES ALSO INCUR A 10% OVERHEAD PAID BY THE COMPANY, WHICH IS A SOURCE OF REVENUE FOR THE TSC ALLIANCE. THE CONSORTIUM TESTED NINE UNIQUE COMPOUNDS IN 2024, RAISING THE TOTAL TESTED TO 91 SINCE 2016. MANY COMPOUNDS WILL ENTER PRECLINICAL TESTING, THOUGH ONLY SOME WILL ADVANCE TO CLINICAL TESTING DUE TO LACK OF EFFICACY AND SAFETY. IN 2012, THE TSC ALLIANCE HELPED CREATE THE TSC CLINICAL RESEARCH CONSORTIUM IN PARTNERSHIP WITH INVESTIGATORS RUNNING CLINICAL STUDIES TO ENSURE CLINICAL RESEARCH IN TSC IS AS EFFICIENT AND EFFECTIVE AS POSSIBLE. SINCE THEN, TSC CLINICAL RESEARCH CONSORTIUM INVESTIGATORS HAVE BEEN AWARDED MORE THAN $40 MILLION BY THE NATIONAL INSTITUTES OF HEALTH (NIH) AND FOOD AND DRUG ADMINISTRATION (FDA) THROUGH COMPETITIVE GRANT PROCESSES. TSC ALLIANCE PERSONNEL SERVE ON THE LEADERSHIP TEAM FOR THE CONSORTIUM, ACTIVELY TRACK ENROLLMENT, AND RAISE COMMUNITY AWARENESS TO HELP IDENTIFY POTENTIAL PARTICIPANTS FOR CLINICAL STUDIES. TSC ALLIANCE ALSO PROVIDES SUPPLEMENTAL FINANCIAL SUPPORT TO ACCELERATE OR EXPAND NIH-FUNDED STUDIES. IN 2020, THE TSC ALLIANCE PROVIDED $200,000 SUPPLEMENTAL FUNDING FOR TSC-STEPS (STOPPING TSC ONSET AND PROGRESSION 2B: SIROLIMUS TSC EPILEPSY PREVENTION STUDY), WHICH IS ONGOING. THE TSC ALLIANCE CONTINUES TO EDUCATE THE COMMUNITY ABOUT THIS PIVOTAL TRIAL. TWENTY-EIGHT INFANTS HAVE BEEN ENROLLED TO DATE AND TWENTY-THREE BIOSPECIMENS COLLECTED. THE TSC ALLIANCE IS ALSO PROVIDING SUPPLEMENTAL FUNDING AND COLLECTING BLOOD SAMPLES FOR THE DEVELOPMENTAL SYNAPTOPATHIES CONSORTIUM (DSC), AN NIH-FUNDED PROJECT THAT INCLUDES STUDIES OF TSC AND THE RELATED RARE DISORDERS PHELAN-MCDERMID SYNDROME AND PTEN HAMARTOMA SYNDROME. THESE THREE RARE DISEASES SEEM TO AFFECT CERTAIN SHARED PATHWAYS INFLUENCING THE DEVELOPMENT OF BRAIN CONNECTIONS, OR SYNAPSES. RESEARCHERS IN THIS STUDY ARE TRYING TO FIND EARLIER SIGNS OF AUTISM SPECTRUM DISORDER (ASD) AND INTELLECTUAL DISABILITY (ID) TO GAIN A BETTER UNDERSTANDING OF ASD/ID IN INDIVIDUALS WITH TSC AND ENABLE EFFECTIVE TREATMENTS AND INTERVENTIONS FOR ASD/ID TO BE FOUND. THE DSC WAS RENEWED IN 2019 FOR A SECOND 5-YEAR FUNDING PERIOD. THE TSC ALLIANCE FUNDS A PORTION OF CLINICAL RESEARCH COORDINATORS' SALARIES AT 5 SITES. IN 2024, THE TSC ALLIANCE AWARDED AN ADDITIONAL 12 MONTHS OF FUNDING, $163,737 IN TOTAL, TO SUPPORT COLLECTION OF ADDITIONAL DATA AND BIOSAMPLES FROM AUGUST 2024 THROUGH JULY 2025. THANKS TO A GIFT FROM THE RAMESH AND KALPANA BHATIA FAMILY FOUNDATION, THE TSC ALLIANCE CREATED ANYA'S ACCELERATOR TO FOCUS ON FURTHERING TRANSLATIONAL RESEARCH ON TAND. THE TSC ALLIANCE HOSTED AN INNOVATION WORKSHOP IN APRIL 2023, WHICH FOCUSED ON IDENTIFYING BIOMARKERS AND PREDICTORS OF SPECIFIC ASPECTS OF TAND THROUGH COLLABORATIVE AND INCLUSIVE ANALYSIS OF EXISTING BIOSAMPLES AND DATA VIA METABOLOMIC, GENETIC (RNA-SEQ), OR OTHER METHODS. AFTER THIS INNOVATIVE WORKSHOP, WE BEGAN PLOTTING A COURSE TO IDENTIFY FLUID-BASED BIOMARKERS TO IMPROVE CLINICAL TRIALS AND CLINICAL CARE ASSOCIATED WITH TAND. IN 2024 WE COMPLETED ANALYSIS OF 84 SAMPLES FROM THE DSC PROJECT UTILIZING PROTEIN ANALYSIS USING AN 11K PROTEIN ASSAY AT SOMALOGIC AND WHOLE GENOME SEQUENCING. IN 2024 THE TSC ALLIANCE APPROVED A PROPOSAL TO BEGIN IN 2025 THE ANYA'S ACCELERATOR PATIENT-REPORTED OUTCOME MEASURE (PROM) PROJECT, LED IN COLLABORATION WITH AGNIES VAN EEGHEN, MD, PHD OF UMC AMSTERDAM. HER PROJECT WILL FOCUS ON THE HARMONIZATION OF PRO MEASURES USED BOTH IN STANDARD OF CARE AND CLINICAL TRIALS TO STANDARDIZE THE ASSESSMENT OF SYMPTOMS UNDER THE TAND UMBRELLA. IN MARCH 2024, THE TSC ALLIANCE HOSTED A REPRODUCTIVE AND PERINATAL HEALTH (RPH) WORKSHOP IN MEMPHIS, TENNESSEE. THE WORKSHOP GATHERED MORE THAN 25 TSC AND LAM EXPERTS AND STAKEHOLDERS TO DISCUSS PRESENT AND FUTURE CLINICAL RECOMMENDATIONS FOR WOMEN WITH TSC AND/OR LAM WHO BECOME PREGNANT. OUTCOMES INCLUDED: THE DEVELOPMENT OF A SURVEY TO GATHER COMMUNITY PERSPECTIVES ON PREGNANCY AND TSC, DRAFTING A CALL-TO-ACTION AND RISK STRATIFICATION MANUSCRIPT TO BE SUBMITTED FOR PUBLICATION, AND IDENTIFYING POTENTIAL COLLABORATORS WITH EXISTING PREGNANCY DATABASES TO GATHER MORE CLINICAL EVIDENCE TOWARDS ESTABLISHING CLINICAL GUIDELINES.
FORM 990, PART III, LINE 4B, DESCRIPTION OF PROGRAM SERVICE:	SUPPORT SERVICES IS DEDICATED TO SUPPORTING INDIVIDUALS AND FAMILIES AFFECTED BY TSC THROUGH OUTREACH PROGRAMS, SUPPORT SERVICES, IMPROVED MEDICAL ACCESS, AND EDUCATIONAL RESOURCES. IN 2024, THE TSC ALLIANCE FULLY IMPLEMENTED A NEW COMMUNITY SUPPORT MODEL THAT PUTS THE TSC COMMUNITY CENTER FOCUSING ON LOCAL RESOURCES, SUPPORT SERVICES, AND ACCESS TO MEDICAL CARE IN CONJUNCTION WITH ENERGIZING THE CURRENT AND FUTURE VOLUNTEER LEADERS TO PROPEL THE TSC ALLIANCE TO THE NEXT LEVEL. THIS MODEL UNITED 36 COMMUNITY ALLIANCES AND ORGANIZED THEM INTO 14 COMMUNITY REGIONS, LED BY MORE THAN 138 DEDICATED LEADERS THROUGHOUT THE UNITED STATES. THE COMMUNITY PROGRAMS TEAM INVESTED MORE THAN 997 TRAINING HOURS TO OUR LEADERS, TO ENSURE THEY WERE WELL EQUIPPED TO SUPPORT AND EMPOWER THE TSC COMMUNITY. AS A RESULT, WE PROVIDED 3,473 PEER-TO-PEER SUPPORT ENGAGEMENTS AND FACILITATED 88 SCHOOL MEETINGS, WHICH INVOLVED TSC 101 TRAINING AND IEP CONSULTATIONS. IN ADDITION, FIVE "ASK AN ADVOCATE" WEBINARS ATTRACTED 609 REGISTRANTS. THE COMMUNITY PROGRAMS TEAM COLLABORATED WITH KEY STAFF TO HOST TWO RESEARCH AND CORPORATE PARTNER WEBINARS. THESE WEBINARS ATTRACTED 142 LIVE ATTENDEES AND GARNERED 267 RECORDED VIEWS AS OF DECEMBER 31, 2024. THE TSC ALLIANCE HOSTED TWO EDUCATIONAL REGIONAL TSC CONFERENCES HELD IN CHAPEL HILL, NC AND PALO ALTO, CA AND TWO TRANSITION WORKSHOPS IN MEMPHIS, TN AND SALT LAKE CITY, UT. THESE CONFERENCES ATTRACTED 245 PARTICIPANTS. THE TSC ALLIANCE'S TSC NAVIGATOR IS AN EASY-TO-USE, INTERACTIVE ONLINE TOOL TO HELP GUIDE INDIVIDUALS AND FAMILIES THROUGH THE COMPLEXITIES OF TSC ACROSS THE LIFESPAN, PROACTIVELY MANAGE THEIR CARE, AND LIVE THEIR FULLEST LIVES. USERS CAN ACCESS INFORMATION BASED ON THE AGE OF ONE'S DIAGNOSIS, SUCH AS PRENATAL, CHILDHOOD, OR ADULT, TO HELP DETERMINE WHICH STEPS WILL HELP EMPOWER THEM THROUGHOUT THEIR INDIVIDUAL JOURNEYS. IN 2024, AS PART OF THE TSC ALLIANCE'S WEBSITE REDESIGN, TSC NAVIGATOR WAS EXPANDED ACROSS MORE PAGES ON THE WEBSITE. TSC NAVIGATOR CONTENT HAD 72,249 PAGE VIEWS IN 2024 FROM 37,869 USERS. SUPPORT NAVIGATORS ASSISTED 290 FAMILIES INCLUDING 23 ONE-HOUR LONG SUPPORT NAVIGATOR CALLS. NINE INDIVIDUALS OR FAMILIES WERE ALSO SUPPORTED FOR MEDICATION ACCESS ISSUES VIA OUR TSC NAVIGATOR PROGRAM DURING 2024, UP FROM 5 IN 2023, CONSISTENT WITH THE GOAL OF PROACTIVELY HELPING PEOPLE AVOID MEDICATION ACCESS ISSUES.
FORM 990, PART III, LINE 4C, DESCRIPTION OF PROGRAM SERVICE:	PUBLIC HEALTH EDUCATION INCREASES AWARENESS OF TSC THROUGHOUT THE GENERAL PUBLIC TO BROADEN THE SCOPE OF SUPPORT AND UNDERSTANDING BEYOND TSC INDIVIDUALS AND THEIR FAMILIES; THESE EFFORTS ALSO WORK TO HELP REACH THE UNDIAGNOSED AND NEWLY DIAGNOSED. DURING 2024, THE TSC ALLIANCE PRODUCED TWO ISSUES OF ITS NATIONAL MAGAZINE, PERSPECTIVE, WHICH IS MAILED TO APPROXIMATELY 19,000 CONSTITUENTS AS WELL AS POSTED ON THE WEBSITE. THE TSC ALLIANCE'S PODCAST SERIES, CALLED TSC NOW, PRODUCED THREE EPISODES WITH 1,391 TOTAL LISTENS. SIX ISSUES OF THE ELECTRONIC TSC MATTERS NEWSLETTER WERE DISTRIBUTED TO 16,838 RECIPIENTS. IN JANUARY 2024, THE TSC DEBUTED A REDESIGNED WEBSITE FEATURING STREAMLINED NAVIGATION. THE TSC ALLIANCE'S WEBSITE INCREASES AWARENESS AND PROVIDES EXTENSIVE EDUCATION THROUGH A MONTHLY AVERAGE OF 22,641 PAGE VIEWS. THE TSC ALLIANCE ALSO RELIES HEAVILY ON SOCIAL MEDIA TO EDUCATE CONSTITUENTS AND PROMOTE NEW RESOURCES AND EVENTS. ITS PRIVATE FACEBOOK TSC DISCUSSION GROUP BOASTS MORE THAN 11,172 MEMBERS FROM AROUND THE WORLD, WHILE ITS X ACCOUNT HAS 2,659 FOLLOWERS, LINKEDIN HAS 2,453 FOLLOWERS AND INSTAGRAM HAS 3,921 FOLLOWERS. TO INCREASE PUBLIC AWARENESS, THE TSC ALLIANCE PARTICIPATED IN THE 12TH ANNUAL TSC GLOBAL AWARENESS DAY ON MAY 15 AS WELL AS TSC AWARENESS MONTH THROUGHOUT MAY. THE TSC ALLIANCE ALSO HEAVILY PROMOTED INFANTILE SPASMS AWARENESS WEEK (DECEMBER 1 TO 7). THESE AWARENESS CAMPAIGNS ALONG WITH THE ORGANIZATION'S VARIOUS NEWS RELEASES AND SOCIAL MEDIA OUTREACH EFFORTS CULMINATED IN MORE THAN 1.1 BILLION CUMULATIVE IMPRESSIONS AND ENGAGEMENTS.
FORM 990, PART VI, SECTION A, LINE 6	MEMBERSHIP IN THE CORPORATION IS AVAILABLE TO ANY PERSON WHO SUBSCRIBES TO THE PURPOSES AND OBJECTIVES OF THE CORPORATION, WITHOUT REGARD TO RACE, RELIGION, GENDER, SEXUAL ORIENTATION, AGE, COLOR, NATIONAL ORIGIN, OR MENTAL OR PHYSICAL HANDICAP OR DISABILITY. THERE IS NO LIMIT TO THE NUMBER OF MEMBERS IN THE CORPORATION. 1) THERE MAY BE ONE OR MORE CLASSES OF MEMBERSHIP AS DETERMINED BY THE BOARD. 2) MEMBERSHIP IS NOT TRANSFERABLE OR ASSIGNABLE.
FORM 990, PART VI, SECTION A, LINE 7A	THE TSC ALLIANCE IS A MEMBERSHIP-BASED ORGANIZATION, WHICH MEANS MEMBERS HELP ELECT THE BOARD OF DIRECTORS. THE TSC ALLIANCE MEMBERSHIP PROGRAM ALLOWS INDIVIDUALS TO STATE THEIR INTENT TO BE A MEMBER FOR THE PURPOSE OF GOVERNANCE. THERE WERE NO LEVELS TO MEMBERSHIP IN 2024. ANYONE CAN BE A MEMBER AT NO COST.
FORM 990, PART VI, SECTION B, LINE 11B	THE FORM 990 IS REVIEWED, IN DETAIL, BY THE BOARD OF DIRECTORS' AUDIT COMMITTEE. RECOMMENDATIONS ARE MADE BY THE COMMITTEE MEMBERS FOR ANY CHANGES/EDITS/ADDITIONS. AFTER THOSE HAVE BEEN INCORPORATED, THE AUDIT COMMITTEE VOTES WHETHER TO APPROVE AND THEN FORWARD THE 990 TO THE FINANCE AND EXECUTIVE COMMITTEES. THE FINANCE AND EXECUTIVE COMMITTEES PERFORM THE FINAL REVIEW AND THEN VOTE WHETHER TO APPROVE ON BEHALF OF THE BOARD OF DIRECTORS. A COPY OF THE APPROVED 990 IS SHARED WITH THE ENTIRE BOARD PRIOR TO ITS FILING WITH THE IRS.
FORM 990, PART VI, SECTION B, LINE 12C	"ANNUALLY EACH MEMBER OF THE BOARD OF DIRECTORS WILL RECEIVE NOTICE OF THE ORGANIZATION'S CONFLICT OF INTEREST STATEMENT. EACH MEMBER WILL BE PROVIDED WITH A STATEMENT TO MAKE DISCLOSURE OF ANY POTENTIAL CONFLICT OF INTEREST. IF DURING THE COURSE OF THE YEAR A POTENTIAL CONFLICT OF INTEREST ARISES THAT HAS NOT PREVIOUSLY BEEN DISCLOSED, THE BOARD MEMBER WILL MAKE WRITTEN NOTICE OF A POTENTIAL CONFLICT OF INTEREST AND RECUSE HIMSELF OR HERSELF FROM ANY DISCUSSIONS AND VOTES IN CONNECTION WITH THE ISSUE IDENTIFIED. ANY TIME A MEMBER IS RECUSED FROM DISCUSSION ON AN ISSUE, THE MINUTES OF COMMITTEE MEETING AND BOARD MEETING WILL DULY RECORD SUCH ACTIONS." THE FOLLOWING POTENTIAL CONFLICTS OF INTEREST WERE DISCLOSED FOR 2024: BOARD MEMBER MUSTAFA SAHIN, PH.D., M.D., IS EMPLOYED AT BOSTON CHILDREN'S HOSPITAL, WHICH RECEIVED $81,869 IN GRANTS AND $9,340 IN FEES FOR SERVICES,FOR PARTICIPATION IN THE TSC NATURAL HISTORY DATABASE. BOARD MEMBER DARCY KRUEGER, MD, MPA, IS EMPLOYED AT THE CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER, WHICH RECEIVED $4,255 IN FEES FOR SERVICES FOR PARTICIPATION IN THE TSC NATURAL HISTORY DATABASE. BOARD MEMBER JESSICA KREFTING, RN, IS EMPLOYED AT UNIVERSITY OF ALABAMA AT BIRMINGHAM, WHICH $7,765 IN FEES FOR SERVICES FOR PARTICIPATION IN THE TSC NATURAL HISTORY DATABASE.
FORM 990, PART VI, SECTION B, LINE 15	"THE COMPENSATION COMMITTEE REVIEWS AND APPROVES THE SALARIES OF THE PRESIDENT/CEO, CHIEF SCIENTIFIC OFFICER, CFO, AND ANY EMPLOYEE APPEARING ON THE FORM 990, IN ACCORDANCE WITH THE TSC ALLIANCE BYLAWS. SUCH REVIEW AND APPROVAL OCCURS INITIALLY UPON HIRING, UPON ANNUAL REVIEWS, AND WHENEVER MODIFIED. THE ORGANIZATION'S EXECUTIVE REMUNERATION HAS BEEN STRUCTURED TO ENSURE THAT IT: IS REASONABLE; PROVIDES A COMPETITIVE COMPENSATION PROGRAM TO RETAIN, ATTRACT AND REWARD KEY EMPLOYEES AND ACHIEVES CLEAR ALIGNMENT BETWEEN TOTAL REMUNERATION AND DELIVERED BUSINESS AND PERSONAL PERFORMANCE OVER THE SHORT AND LONG-TERMS. THE COMPENSATION IS REVIEWED BY THE COMPENSATION COMMITTEE TO ENSURE: - COMPARABILITY, - PROPER REVIEW, AND - SUBSTANTIATION IN SETTING THE COMPENSATION."
FORM 990, PART VI, SECTION C, LINE 19	ALL GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE AVAILABLE UPON WRITTEN REQUEST.
FORM 990, PART XII, LINE 2C:	THIS PROCESS HAS NOT CHANGED FROM THE PRIOR YEAR.

Schedule R IRS990ScheduleR

Id Related Tax Exempt Org IdRelatedTaxExemptOrgGrp

Disregarded Entity Name DisregardedEntityName

Field	Value	IRS element (for citing)
Business Name Line1	TSC ALLIANCE ENDOWMENT FUND INC	BusinessNameLine1Txt

US Address USAddress

Field	Value	IRS element (for citing)
Address Line1	8737 COLESVILLE ROAD NO 400	AddressLine1Txt
City	SILVER SPRING	CityNm
State Abbreviation	MD	StateAbbreviationCd
ZIP	20910	ZIPCd

Field	Value	IRS element (for citing)
EIN	521926919	EIN
Primary Activities	SUPPORT THE MISSION OF THE TSC ALLIANCE	PrimaryActivitiesTxt
Legal Domicile State	MD	LegalDomicileStateCd
Exempt Code Section	501(C)(3)	ExemptCodeSectionTxt
Public Charity Status	LINE 12B, II	PublicCharityStatusTxt
Direct Controlling NA	N/A	DirectControllingNACd
Controlled Organization	0	ControlledOrganizationInd

Field	Value	IRS element (for citing)
Receipt Of Int Annts Rnts Rylts	0	ReceiptOfIntAnntsRntsRyltsInd
Gift Grnt Or Cap Contri To Oth Org	0	GiftGrntOrCapContriToOthOrgInd
Gift Grnt Cap Contri From Oth Org	Yes (1)	GiftGrntCapContriFromOthOrgInd
Loans Or Guarantees To Other Org	0	LoansOrGuaranteesToOtherOrgInd
Loans Or Guarantees From Oth Org	0	LoansOrGuaranteesFromOthOrgInd
Div Related Organization	0	DivRelatedOrganizationInd
Asset Sale To Other Org	0	AssetSaleToOtherOrgInd
Asset Purchase From Other Org	0	AssetPurchaseFromOtherOrgInd
Asset Exchange	0	AssetExchangeInd
Rental Of Facilities To Oth Org	0	RentalOfFacilitiesToOthOrgInd
Rental Of Fclts From Oth Org	0	RentalOfFcltsFromOthOrgInd
Perform Of Services For Oth Org	0	PerformOfServicesForOthOrgInd
Perform Of Services By Other Org	0	PerformOfServicesByOtherOrgInd
Sharing Of Facilities	Yes (1)	SharingOfFacilitiesInd
Paid Employees Sharing	Yes (1)	PaidEmployeesSharingInd
Reimbursement Paid To Other Org	0	ReimbursementPaidToOtherOrgInd
Reimbursement Paid By Other Org	0	ReimbursementPaidByOtherOrgInd
Transfer To Other Org	0	TransferToOtherOrgInd
Transfer From Other Org	0	TransferFromOtherOrgInd

Transactions Related Org TransactionsRelatedOrgGrp

Other Organization Name OtherOrganizationName

Field	Value	IRS element (for citing)
Business Name Line1	TSC ALLIANCE ENDOWMENT FUND INC	BusinessNameLine1Txt

Field	Value	IRS element (for citing)
Transaction Type	C	TransactionTypeTxt
Involved	$239,000	InvolvedAmt
Method Of Amount Determination	ACTUAL CASH RECEIVED	MethodOfAmountDeterminationTxt