NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC: Form 990, tax year 2023

View the entire original 990 at ProPublica ↗

Organization: NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC (EIN 95-3018799)
Tax period: 2023-01-01 to 2023-12-31
Filed: 2024-09-24
IRS object ID: 202432689349301018
Schema version: 2023v5.1
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 O
Schedule R

Return header ReturnHeader

Field	Value	IRS element (for citing)
Return	2024-09-24T12:54:15-05:00	ReturnTs
Tax Period End	2023-12-31	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	2023-01-01	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 COLLESVILLE 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	2024-09-17	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	KRISTIN A JACQUELIN CPA	PreparerPersonNm
PTIN	P01325865	PTIN
Phone	2023319880	PhoneNum
Preparation	2024-09-24	PreparationDt

Field	Value	IRS element (for citing)
Tax	2023	TaxYr
Build TS	2024-08-08 14:25:15Z	BuildTS

Form 990 IRS990

Field	Value	IRS element (for citing)
Amended Return	Yes (X)	AmendedReturnInd

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 COLLESVILLE ROAD 400	AddressLine1Txt
City	SILVER SPRING	CityNm
State Abbreviation	MD	StateAbbreviationCd
ZIP	20910	ZIPCd

Field	Value	IRS element (for citing)
Gross Receipts	$10,180,515	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	30	VotingMembersGoverningBodyCnt
Voting Members Independent	30	VotingMembersIndependentCnt
Total Employee	26	TotalEmployeeCnt
Total Volunteers	2234	TotalVolunteersCnt
Total Gross UBI	$0	TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm	$0	NetUnrelatedBusTxblIncmAmt
PY Contributions Grants	$7,016,851	PYContributionsGrantsAmt
CY Contributions Grants	$6,747,948	CYContributionsGrantsAmt
PY Program Service Revenue	$2,720,317	PYProgramServiceRevenueAmt
CY Program Service Revenue	$2,815,353	CYProgramServiceRevenueAmt
PY Investment Income	$2,636	PYInvestmentIncomeAmt
CY Investment Income	$36,732	CYInvestmentIncomeAmt
PY Other Revenue	-$830,262	PYOtherRevenueAmt
CY Other Revenue	$416,350	CYOtherRevenueAmt
PY Total Revenue	$8,909,542	PYTotalRevenueAmt
CY Total Revenue	$10,016,383	CYTotalRevenueAmt
PY Grants And Similar Paid	$1,032,155	PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid	$845,292	CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members	$0	PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members	$0	CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid	$2,896,346	PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid	$3,024,376	CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns	$0	PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns	$0	CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense	$1,150,291	CYTotalFundraisingExpenseAmt
PY Other Expenses	$4,135,183	PYOtherExpensesAmt
CY Other Expenses	$4,597,980	CYOtherExpensesAmt
PY Total Expenses	$8,063,684	PYTotalExpensesAmt
CY Total Expenses	$8,467,648	CYTotalExpensesAmt
PY Revenues Less Expenses	$845,858	PYRevenuesLessExpensesAmt
CY Revenues Less Expenses	$1,548,735	CYRevenuesLessExpensesAmt
Total Assets BOY	$14,827,937	TotalAssetsBOYAmt
Total Assets EOY	$16,085,768	TotalAssetsEOYAmt
Total Liabilities BOY	$2,373,091	TotalLiabilitiesBOYAmt
Total Liabilities EOY	$2,088,420	TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY	$12,454,846	NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY	$13,997,348	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	$5,022,281	ExpenseAmt
Grant	$845,292	GrantAmt
Revenue	$2,621,353	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 $37 MILLION INTO TSC RESEARCH PROJECTS THROUGH GRANTS AND CONTRACTS: $20.6 MILLION IN RESEARCH GRANTS AND POSTDOCTORAL FELLOWSHIPS, $5.3 MILLION INTO THE NATURAL HISTORY DATABASE AND BIOSAMPLE REPOSITORY, $9.6 MILLION INTO THE PRECLINICAL CONSORTIUM, AND $1.6 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/GRANTS.IN 2023, THE TSC ALLIANCE HOSTED OUR BIENNIAL INTERNATIONAL TSC RESEARCH CONFERENCE: FUELING THE FUTURE. FIFTEEN PERCENT OF ATTENDEES SELF-IDENTIFIED AS MEMBERS OF GROUPS HISTORICALLY UNDERREPRESENTED IN BIOMEDICAL RESEARCH. THE CONFERENCE FEATURED AN EARLY CAREER RESEARCH SYMPOSIUM, A KEYNOTE SPEECH FROM DR. MARTINA BEBIN, 30 ORAL PRESENTATIONS, 59 POSTERS, A TSC INTERNATIONAL WORKSHOP, AND A COMBINED CLOSING SESSION WITH TSC & LAM REGIONAL CONFERENCE PARTICIPANTS. THE CONFERENCE ALSO FEATURED FOUR BREAKOUT WORKING GROUP SESSIONS (TRANSITION FROM PEDIATRIC TO ADULT, NEURODEVELOPMENT AND EARLY INTERVENTION, CELLULAR ENERGETICS AND METABOLISM, AND BIG DATA AND SINGLE CELL APPROACHES/ANALYSIS) TO ALLOW TIME FOR ATTENDEES TO MEET WITH OTHERS IN THEIR FIELD AND WORK TOWARD SOLUTIONS FOR CURRENT ISSUES IN THEIR AREA.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 2023, 2,678 PEOPLE WITH TSC WERE 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 OVER THE NEXT 10 YEARS OR MORE. 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 31, 2023, THE TSC BIOSAMPLE REPOSITORY HAS ACQUIRED 2,654 BIOSAMPLES: 1012 BLOOD SAMPLES FROM INDIVIDUALS WITH TSC ENROLLED IN THE NHD, 452 BUCCAL SAMPLES FROM INDIVIDUALS WITH TSC ENROLLED IN THE NHD, 197 TISSUE SAMPLES FROM INDIVIDUALS WITH TSC ENROLLED IN THE NHD, 591 BLOOD SAMPLES FROM THE TSC CLINICAL RESEARCH CONSORTIUM COLLABORATIVE PROJECTS, 389 DNA SAMPLES FROM THE TSC AUTISM CENTER OF EXCELLENCE NETWORK AUTISM BIOMARKER STUDY, AND 10 CONTROL SAMPLES. 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 473 BLOOD SAMPLES VIA MOBILE PHLEBOTOMY. TO ENCOURAGE AND ENABLE MORE RESEARCHERS TO UTILIZE BIOSAMPLES, THE TSC ALLIANCE AWARDED THREE SEED GRANTS IN 2023, TOTALING $60,000, 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 72 SAMPLES IN 2023, TOTALING 115 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 2023, 105 INDIVIDUALS WERE ENROLLED 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.	Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

Field	Value	IRS element (for citing)
Expense	$895,227	ExpenseAmt
Desc	SUPPORT SERVICES. SEE SCHEDULE O FOR FULL PROGRAM DESCRIPTION.	Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

Field	Value	IRS element (for citing)
Expense	$554,030	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	$287,855	ExpenseAmt
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 $1.25 MILLION IN STATE APPROPRIATIONS. THE ANNUAL TSC ALLIANCE MARCH ON CAPITOL HILL TO ADVOCATE FOR FEDERAL FUNDING FOR THE TUBEROUS SCLEROSIS COMPLEX RESEARCH PROGRAM (TSCRP) AT THE DEPARTMENT OF DEFENSE'S (DOD) CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM (CDMRP) TOOK PLACE IN EARLY MARCH 2023. ADVOCATES MET WITH MORE THAN 322 CONGRESSIONAL OFFICES VIRTUALLY AND IN PERSON TO ASK FOR $10 MILLION IN FUNDING FOR THE TSCRP. THE HOUSE TSCRP DEAR COLLEAGUE LETTER SPONSORED BY REPRESENTATIVES FITZPATRICK (R-PA) AND RASKIN (D-MD) CLOSED WITH 191SIGNERS. THE SENATE LETTER SPONSORED BY SENATORS CRAMER (R-ND) AND HEINRICH (D-NM) CLOSED WITH 41 SIGNERS. TOTAL FUNDING FOR THE TSCRP HAS BEEN $113 MILLION SINCE 2002, INCLUDING A $10 MILLION APPROPRIATION FOR FY234. 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 SIX GLOBAL PARTNERSHIPS, INCLUDING TSC ALLIANCE OF ISRAEL, TS CANADA ST, TSC ALLIANCE OF MEXICO, TSC ALLIANCE FOUNDATION (IN THAILAND), HUNGARIAN FOUNDATION FOR TUBEROUS SCLEROSIS, AND TSC ALLIANCE OF INDIA. THE TSC ALLIANCE RECOGNIZES 13 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. STAFF ALSO PARTICIPATED IN THE TSC SPECIAL INTEREST GROUP SESSION, AND THE TSC ALLIANCE HOSTED MORE THAN 100 PEOPLE AT A RECEPTION WITH PRESENTATIONS BY PARENTS OF A CHILD WITH TSC AND BY DR. ANGELIQUE BORDEY, WHO DESCRIBED HOW TSC ALLIANCE HAS IMPACTED HER RESEARCH. THE TSC ALLIANCE PARTICIPATED IN OR PRESENTED AT 26 PROFESSIONAL MEETINGS IN 2023 INCLUDING PRETOLA COURSE, RESEARCH AMERICA ANNUAL ADVOCACY AWARDS, WOMEN AT BRIDGE LEADERSHIP SPEAKING SERIES, INSITRO TOWN HALL, RARE DISEASE INNOVATION AND PARTNERING SUMMIT, ANYA'S ACCELERATOR WORKSHOP, NORD, TSC ALLIANCE MEXICO BRIEFING, EAN CONGRESSIONAL BRIEFING, ATS ANNUAL MEETING, INTERAGENCY COLLABORATIVE TO ADVANCE RESEARCH IN EPILEPSY (ICARE), RARE DISEASES INTERNATIONAL WORLD HEALTH ASSEMBLY, UCP ANNUAL CONFERENCE, MARINUS TOWN HALL, TANDEM MINI SYMPOSIUM, ETSC WORKSHOP, NINDS NONPROFIT FORUM, CRISIS INTERVENTION TRAINING INTERNATIONAL, TSCI WORKSHOP, TSC REPRODUCTIVE & PERINATAL TASK FORCE MEETING, LGS MEETING, GLOBAL GENES RARE SUMMIT, PCORI ANNUAL MEETING, APERTURA TOWN HALL, RDCRN FALL MEETING, AES, AND EAN BRIEFING.	Desc

Field	Value	IRS element (for citing)
Total Other Prog Srvc Expense	$287,855	TotalOtherProgSrvcExpenseAmt
Total Program Service Expenses	$6,759,393	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	0	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	33	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	30	GoverningBodyVotingMembersCnt
Independent Voting Member	30	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 COLLESVILLE ROAD 400	AddressLine1Txt
City	SILVER SPRING	CityNm
State Abbreviation	MD	StateAbbreviationCd
ZIP	20910	ZIPCd

Form990 Part VII Section A Form990PartVIISectionAGrp (37 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
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	2.00	Yes (X)	Yes (X)	$0	$0	$0
PETER CRINO
IMMEDIATE PAST CHAIR	2.00	Yes (X)		$0	$0	$0
DEREK BAUER
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
JULIE BLUM
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
MATT BOLGER
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
CHIP BURKHALTER
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
LISA CARLTON
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
DAVID COIT
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
MARK CARROLL
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
JULIAN GANGOLLI
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
TANJALA GIPSON
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
JONATHAN GOLDSTEIN
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
STEVEN GOLDSTEIN
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
ROB GRANDIA
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
DANA HOLINKA
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
SHAFALI JESTE
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
JESSICA KREFTING
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
DARCY KRUEGER
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
PATROSKI LAWSON
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
KRISTI LENGYEL
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
HEATHER LENS
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
LAURA MARKS
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
DIANE MCSWAIN
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
MUSTAFA SAHIN
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
SEAN SHILLINGER
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
VANESSA VAZQUEZ
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
TARA ZIMMERMAN
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
KARI LUTHER ROSBECK
PRESIDENT & CEO	54.00		Yes (X)	$223,746	$2,260	$29,417	1.00
CYNTHIA ARCURI
CHIEF FINANCIAL OFFICER	42.00		Yes (X)	$176,989	$9,315	$9,482	1.00
STEVEN ROBERDS
CHIEF SCIENTIFIC OFFICER	45.00			$237,208	$0	$26,563		Yes (X)
DEAN RAGER-AGUIAR
VICE PRESIDENT, TRANSLATIONAL RESEARCH	45.00			$177,725	$0	$28,091			Yes (X)
LISA MOSS
VICE PRESIDENT, DONOR RELATIONS	45.00			$124,914	$0	$24,144			Yes (X)
JAYE ISHAM
CHIEF OUTREACH OFFICER	45.00			$137,218	$0	$5,426			Yes (X)
ASHLEY POUNDERS
DIRECTOR OF MEDICAL AFFAIRS	45.00			$115,372	$0	$13,076			Yes (X)

Field	Value	IRS element (for citing)
Total Reportable Comp From Org	$1,193,172	TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org	$11,575	TotReportableCompRltdOrgAmt
Total Other Compensation	$136,199	TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K	7	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 S	NEW YORK	NY	10003	RESEARCH LAB SERVICES	$1,565,754
VAN ANDEL RESEARCH INSTITUTE
333 BOSTWICK AVE NE	GRAND RAPIDS	MI	49503	RESEARCH LAB SERVICES	$493,453
CAVAROCCHI RUSCIO DENNIS & ASSOCIATES
600 MARYLAND AVE SW SUITE 220 EAST	WASHINGTON	DC	20024	GOVERNMENT RELATIONS	$117,714

Field	Value	IRS element (for citing)
Cntrct Rcvd Greater Than100 K	3	CntrctRcvdGreaterThan100KCnt
Federated Campaigns	$40,093	FederatedCampaignsAmt
Membership Dues	$1,100	MembershipDuesAmt
Fundraising	$1,179,453	FundraisingAmt
Related Organizations	$572,625	RelatedOrganizationsAmt
All Other Contributions	$4,954,677	AllOtherContributionsAmt
Total Contributions	$6,747,948	TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp (2 entries)

DescDesc	BusinessBusinessCd	Total Revenue ColumnTotalRevenueColumnAmt	Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt	ExclusionExclusionAmt
CONTRACT REVENUE	900099	$2,548,976	$2,548,976
CONFERENCE REVENUE	900099	$266,377	$72,377	$194,000

Field	Value	IRS element (for citing)
Total Program Service Revenue	$2,815,353	TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

Field	Value	IRS element (for citing)
Total Revenue Column	$36,732	TotalRevenueColumnAmt
Exclusion	$36,732	ExclusionAmt

Field	Value	IRS element (for citing)
Fundraising Gross Income	$258,687	FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event	$1,179,453	ContriRptFundraisingEventAmt
Fundraising Direct Expenses	$164,132	FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

Field	Value	IRS element (for citing)
Total Revenue Column	$94,555	TotalRevenueColumnAmt
Exclusion	$94,555	ExclusionAmt

Other Revenue Misc OtherRevenueMiscGrp

Field	Value	IRS element (for citing)
Desc	CHANGE IN INTEREST OF AFFILIATE	Desc
Business	900099	BusinessCd
Total Revenue Column	$320,800	TotalRevenueColumnAmt
Exclusion	$320,800	ExclusionAmt

Miscellaneous Revenue MiscellaneousRevenueGrp

Field	Value	IRS element (for citing)
Total Revenue Column	$995	TotalRevenueColumnAmt
Exclusion	$995	ExclusionAmt

Field	Value	IRS element (for citing)
Other Revenue Total	$321,795	OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

Field	Value	IRS element (for citing)
Total Revenue Column	$10,016,383	TotalRevenueColumnAmt
Related Or Exempt Func Income	$2,621,353	RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue	$0	UnrelatedBusinessRevenueAmt
Exclusion	$647,082	ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

Field	Value	IRS element (for citing)
Total	$696,542	TotalAmt
Program Services	$696,542	ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

Field	Value	IRS element (for citing)
Total	$148,750	TotalAmt
Program Services	$148,750	ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

Field	Value	IRS element (for citing)
Total	$703,405	TotalAmt
Program Services	$439,278	ProgramServicesAmt
Management And General	$102,064	ManagementAndGeneralAmt
Fundraising	$162,063	FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

Field	Value	IRS element (for citing)
Total	$1,867,712	TotalAmt
Program Services	$1,166,420	ProgramServicesAmt
Management And General	$271,060	ManagementAndGeneralAmt
Fundraising	$430,232	FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

Field	Value	IRS element (for citing)
Total	$52,530	TotalAmt
Program Services	$33,680	ProgramServicesAmt
Management And General	$5,461	ManagementAndGeneralAmt
Fundraising	$13,389	FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

Field	Value	IRS element (for citing)
Total	$222,386	TotalAmt
Program Services	$142,119	ProgramServicesAmt
Management And General	$24,273	ManagementAndGeneralAmt
Fundraising	$55,994	FundraisingAmt

Payroll Taxes PayrollTaxesGrp

Field	Value	IRS element (for citing)
Total	$178,343	TotalAmt
Program Services	$113,532	ProgramServicesAmt
Management And General	$20,556	ManagementAndGeneralAmt
Fundraising	$44,255	FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

Field	Value	IRS element (for citing)
Total	$17,690	TotalAmt
Program Services	$11,342	ProgramServicesAmt
Management And General	$2,750	ManagementAndGeneralAmt
Fundraising	$3,598	FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

Field	Value	IRS element (for citing)
Total	$23,250	TotalAmt
Program Services	$14,907	ProgramServicesAmt
Management And General	$3,614	ManagementAndGeneralAmt
Fundraising	$4,729	FundraisingAmt

Fees For Services Lobbying FeesForServicesLobbyingGrp

Field	Value	IRS element (for citing)
Total	$116,364	TotalAmt
Program Services	$74,606	ProgramServicesAmt
Management And General	$18,090	ManagementAndGeneralAmt
Fundraising	$23,668	FundraisingAmt

Fees For Services Other FeesForServicesOtherGrp

Field	Value	IRS element (for citing)
Total	$219,360	TotalAmt
Program Services	$140,642	ProgramServicesAmt
Management And General	$34,102	ManagementAndGeneralAmt
Fundraising	$44,616	FundraisingAmt

Advertising AdvertisingGrp

Field	Value	IRS element (for citing)
Total	$8,473	TotalAmt
Program Services	$5,492	ProgramServicesAmt
Management And General	$9	ManagementAndGeneralAmt
Fundraising	$2,972	FundraisingAmt

Office Expenses OfficeExpensesGrp

Field	Value	IRS element (for citing)
Total	$328,107	TotalAmt
Program Services	$172,198	ProgramServicesAmt
Management And General	$9,714	ManagementAndGeneralAmt
Fundraising	$146,195	FundraisingAmt

Information Technology InformationTechnologyGrp

Field	Value	IRS element (for citing)
Total	$161,819	TotalAmt
Program Services	$80,801	ProgramServicesAmt
Management And General	$15,642	ManagementAndGeneralAmt
Fundraising	$65,376	FundraisingAmt

Occupancy OccupancyGrp

Field	Value	IRS element (for citing)
Total	$144,753	TotalAmt
Program Services	$91,950	ProgramServicesAmt
Management And General	$16,592	ManagementAndGeneralAmt
Fundraising	$36,211	FundraisingAmt

Travel TravelGrp

Field	Value	IRS element (for citing)
Total	$352,743	TotalAmt
Program Services	$294,269	ProgramServicesAmt
Management And General	$5,315	ManagementAndGeneralAmt
Fundraising	$53,159	FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

Field	Value	IRS element (for citing)
Total	$447,239	TotalAmt
Program Services	$404,633	ProgramServicesAmt
Management And General	$7,811	ManagementAndGeneralAmt
Fundraising	$34,795	FundraisingAmt

Depreciation Depletion DepreciationDepletionGrp

Field	Value	IRS element (for citing)
Total	$69,312	TotalAmt
Program Services	$52,790	ProgramServicesAmt
Management And General	$5,255	ManagementAndGeneralAmt
Fundraising	$11,267	FundraisingAmt

Insurance InsuranceGrp

Field	Value	IRS element (for citing)
Total	$13,070	TotalAmt
Program Services	$8,319	ProgramServicesAmt
Management And General	$1,511	ManagementAndGeneralAmt
Fundraising	$3,240	FundraisingAmt

Other Expenses OtherExpensesGrp (3 entries)

DescDesc	TotalTotalAmt	Program ServicesProgramServicesAmt	Management And GeneralManagementAndGeneralAmt	FundraisingFundraisingAmt
PRECLINICAL CONSORTIUM	$2,321,442	$2,321,442
NHD BIOSAMPLE REPOSIT	$328,386	$328,386
DUES AND SUBSCRIPTIONS	$39,981	$13,730	$12,520	$13,731

All Other Expenses AllOtherExpensesGrp

Field	Value	IRS element (for citing)
Total	$5,991	TotalAmt
Program Services	$3,565	ProgramServicesAmt
Management And General	$1,625	ManagementAndGeneralAmt
Fundraising	$801	FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

Field	Value	IRS element (for citing)
Total	$8,467,648	TotalAmt
Program Services	$6,759,393	ProgramServicesAmt
Management And General	$557,964	ManagementAndGeneralAmt
Fundraising	$1,150,291	FundraisingAmt

Field	Value	IRS element (for citing)
Joint Costs	Yes (X)	JointCostsInd

Total Joint Costs TotalJointCostsGrp

Field	Value	IRS element (for citing)
Total	$43,084	TotalAmt
Program Services	$21,542	ProgramServicesAmt
Management And General	$21,542	ManagementAndGeneralAmt
Fundraising	$0	FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

Field	Value	IRS element (for citing)
BOY	$1,711,209	BOYAmt
EOY	$1,487,710	EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

Field	Value	IRS element (for citing)
BOY	$694,859	BOYAmt
EOY	$700,650	EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

Field	Value	IRS element (for citing)
BOY	$5,280,316	BOYAmt
EOY	$4,306,013	EOYAmt

Accounts Receivable AccountsReceivableGrp

Field	Value	IRS element (for citing)
BOY	$181,490	BOYAmt
EOY	$350,534	EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

Field	Value	IRS element (for citing)
BOY	$277,696	BOYAmt
EOY	$283,821	EOYAmt

Field	Value	IRS element (for citing)
Land Bldg Equip Cost Or Other Bss	$811,270	LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec	$417,309	LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

Field	Value	IRS element (for citing)
BOY	$463,272	BOYAmt
EOY	$393,961	EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

Field	Value	IRS element (for citing)
EOY	$1,752,986	EOYAmt

Other Assets Total OtherAssetsTotalGrp

Field	Value	IRS element (for citing)
BOY	$6,219,095	BOYAmt
EOY	$6,810,093	EOYAmt

Total Assets TotalAssetsGrp

Field	Value	IRS element (for citing)
BOY	$14,827,937	BOYAmt
EOY	$16,085,768	EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

Field	Value	IRS element (for citing)
BOY	$891,501	BOYAmt
EOY	$813,246	EOYAmt

Deferred Revenue DeferredRevenueGrp

Field	Value	IRS element (for citing)
BOY	$285,264	BOYAmt
EOY	$189,493	EOYAmt

Other Liabilities OtherLiabilitiesGrp

Field	Value	IRS element (for citing)
BOY	$1,196,326	BOYAmt
EOY	$1,085,681	EOYAmt

Total Liabilities TotalLiabilitiesGrp

Field	Value	IRS element (for citing)
BOY	$2,373,091	BOYAmt
EOY	$2,088,420	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	$5,151,339	BOYAmt
EOY	$6,372,958	EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

Field	Value	IRS element (for citing)
BOY	$7,303,507	BOYAmt
EOY	$7,624,390	EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

Field	Value	IRS element (for citing)
BOY	$12,454,846	BOYAmt
EOY	$13,997,348	EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

Field	Value	IRS element (for citing)
BOY	$14,827,937	BOYAmt
EOY	$16,085,768	EOYAmt

Field	Value	IRS element (for citing)
Reconcilation Revenue Expnss	$1,548,735	ReconcilationRevenueExpnssAmt
Net Unrlzd Gains Losses Invst	-$6,233	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	$5,527,543	CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years	$4,345,011	CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years	$5,769,053	CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year	$7,016,851	CurrentTaxYearMinus1YearAmt
Current Tax Year	$6,496,698	CurrentTaxYearAmt
Total	$29,155,156	TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

Field	Value	IRS element (for citing)
Current Tax Year Minus4 Years	$5,527,543	CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years	$4,345,011	CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years	$5,769,053	CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year	$7,016,851	CurrentTaxYearMinus1YearAmt
Current Tax Year	$6,496,698	CurrentTaxYearAmt
Total	$29,155,156	TotalAmt

Field	Value	IRS element (for citing)
Substantial Contributors Tot	$4,732,702	SubstantialContributorsTotAmt
Public Support Total170	$24,422,454	PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

Field	Value	IRS element (for citing)
Current Tax Year Minus4 Years	$27,444	CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years	$11,188	CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years	$3,809	CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year	$2,382	CurrentTaxYearMinus1YearAmt
Current Tax Year	$36,732	CurrentTaxYearAmt
Total	$81,555	TotalAmt

Other Income170 OtherIncome170Grp

Field	Value	IRS element (for citing)
Current Tax Year Minus4 Years	$714	CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus1 Year	$15,492	CurrentTaxYearMinus1YearAmt
Current Tax Year	$995	CurrentTaxYearAmt
Total	$17,201	TotalAmt

Field	Value	IRS element (for citing)
Total Support	$29,253,912	TotalSupportAmt
Gross Receipts Rltd Activities	$10,557,404	GrossReceiptsRltdActivitiesAmt
Public Support CY170	0.83480	PublicSupportCY170Pct
Public Support PY170	0.82010	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	$1,345	FilingOrganizationsTotalAmt

Total Direct Lobbying TotalDirectLobbyingGrp

Field	Value	IRS element (for citing)
Filing Organizations Total	$187,396	FilingOrganizationsTotalAmt

Total Lobbying Expend TotalLobbyingExpendGrp

Field	Value	IRS element (for citing)
Filing Organizations Total	$188,741	FilingOrganizationsTotalAmt

Other Exempt Purpose Expend OtherExemptPurposeExpendGrp

Field	Value	IRS element (for citing)
Filing Organizations Total	$7,128,616	FilingOrganizationsTotalAmt

Total Exempt Purpose Expend TotalExemptPurposeExpendGrp

Field	Value	IRS element (for citing)
Filing Organizations Total	$7,317,357	FilingOrganizationsTotalAmt

Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp

Field	Value	IRS element (for citing)
Filing Organizations Total	$515,868	FilingOrganizationsTotalAmt

Grassroots Nontaxable GrassrootsNontaxableGrp

Field	Value	IRS element (for citing)
Filing Organizations Total	$128,967	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	$423,685	CurrentYearMinus3Amt
Current Year Minus2	$497,465	CurrentYearMinus2Amt
Current Year Minus1	$550,968	CurrentYearMinus1Amt
Current Year	$515,868	CurrentYearAmt
Total	$1,987,986	TotalAmt

Field	Value	IRS element (for citing)
Lobbying Ceiling	$2,981,979	LobbyingCeilingAmt

Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp

Field	Value	IRS element (for citing)
Current Year Minus3	$123,014	CurrentYearMinus3Amt
Current Year Minus2	$154,139	CurrentYearMinus2Amt
Current Year Minus1	$162,771	CurrentYearMinus1Amt
Current Year	$188,741	CurrentYearAmt
Total	$628,665	TotalAmt

Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp

Field	Value	IRS element (for citing)
Current Year Minus3	$105,921	CurrentYearMinus3Amt
Current Year Minus2	$124,366	CurrentYearMinus2Amt
Current Year Minus1	$137,742	CurrentYearMinus1Amt
Current Year	$128,967	CurrentYearAmt
Total	$496,996	TotalAmt

Field	Value	IRS element (for citing)
Grassroots Ceiling	$745,494	GrassrootsCeilingAmt

Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp

Field	Value	IRS element (for citing)
Current Year Minus3	$895	CurrentYearMinus3Amt
Current Year Minus2	$1,127	CurrentYearMinus2Amt
Current Year Minus1	$1,395	CurrentYearMinus1Amt
Current Year	$1,345	CurrentYearAmt
Total	$4,762	TotalAmt

Schedule D IRS990ScheduleD

CY Endwmt Fund CYEndwmtFundGrp

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 Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp

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 Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp

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 Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp

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

CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp

Field	Value	IRS element (for citing)
Beginning Year Balance	$5,193,934	BeginningYearBalanceAmt
Contributions	$78,962	ContributionsAmt
Investment Earnings Or Losses	$959,121	InvestmentEarningsOrLossesAmt
Other Expenditures	$288,356	OtherExpendituresAmt
Administrative Expenses	$27,856	AdministrativeExpensesAmt
End Year Balance	$5,915,805	EndYearBalanceAmt

Field	Value	IRS element (for citing)
Board Designated Balance EOY	0.83606	BoardDesignatedBalanceEOYPct
Prmnnt Endowment Balance EOY	0.15789	PrmnntEndowmentBalanceEOYPct
Term Endowment Balance EOY	0.00605	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	$153,160	DepreciationAmt
Book Value	$296,112	BookValueAmt

Equipment EquipmentGrp

Field	Value	IRS element (for citing)
Other Cost Or Other Basis	$281,726	OtherCostOrOtherBasisAmt
Depreciation	$183,877	DepreciationAmt
Book Value	$97,849	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	$393,961	TotalBookValueLandBuildingsAmt

Other Assets Org OtherAssetsOrgGrp (3 entries)

DescDesc	Book ValueBookValueAmt
NET ASSETS OF AFFILIATE	$5,821,187
OPERATING LEASE RIGHT-OF-USE ASSET	$654,282
DUE FROM AFFILIATE	$334,624

Field	Value	IRS element (for citing)
Total Book Value Other Assets	$6,810,093	TotalBookValueOtherAssetsAmt

Other Liabilities Org OtherLiabilitiesOrgGrp (2 entries)

DescDesc	AmtAmt
OPERATING LEASE LIABILITY	$1,084,988
DUE FROM RELATED PARTY	$693

Field	Value	IRS element (for citing)
Total Liability	$1,085,681	TotalLiabilityAmt
Total Rev Etc Audited Fincl Stmt	$10,024,868	TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst	-$6,233	NetUnrealizedGainsInvstAmt
Donated Services And Use Fclts	$14,718	DonatedServicesAndUseFcltsAmt
Revenue Not Reported	$8,485	RevenueNotReportedAmt
Revenue Subtotal	$10,016,383	RevenueSubtotalAmt
Revenue Not Reported Fincl Stmt	$0	RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990	$10,016,383	TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt	$8,482,366	TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts	$14,718	DonatedServicesUseFcltsAmt
Expenses Not Reported	$14,718	ExpensesNotReportedAmt
Expenses Subtotal	$8,467,648	ExpensesSubtotalAmt
Expenses Not Rpt Fincl Stmt	$0	ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990	$8,467,648	TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail (3 entries)

Form And Line ReferenceFormAndLineReferenceDesc	ExplanationExplanationTxt
PART V, LINE 4:	THE ALLIANCE'S ENDOWMENTS CONSIST OF TWO FUNDS ESTABLISHED FOR DIFFERENT PURPOSES. THE ALLIANCE'S ENDOWMENTS INCLUDE ONE TRADITIONAL DONOR-RESTRICTED ENOWMENT FUND AND ONE BOARD-DESIGNATED ENDOWMENT FUND. THE BOARD-DESIGNATED ENDOWMENT FUND SOLELY CONSISTS OF THE ENDOWMENT FUND'S UNRESTRICTED NET ASSET BALANCE.
PART XII, LINE 2D - OTHER ADJUSTMENTS:	ROUNDING
PART XII, LINE 4B - OTHER ADJUSTMENTS:	FUNDRAISING EXPENSES INCLUDED ON PART VIII

Schedule F IRS990ScheduleF

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

Account Activities Outside US AccountActivitiesOutsideUSGrp

Field	Value	IRS element (for citing)
Region	EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM	RegionTxt
Offices	3	OfficesCnt
Employee	0	EmployeeCnt
Type Of Activities Conducted	GRANTS TO RECIPIENTS LOCATED IN REGION	TypeOfActivitiesConductedTxt
Specific Services Provided	RESEARCH GRANTS	SpecificServicesProvidedTxt
Region Total Expenditures	$148,750	RegionTotalExpendituresAmt

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	$148,750	SubtotalSpentAmt
Continuation Spent	$0	ContinuationSpentAmt
Total Spent	$148,750	TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (4 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	$18,750	WIRE TRANSFER	$0
EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM	RESEARCH ON TUBEROUS SCLEROSIS COMPLEX	$75,000	WIRE TRANSFER	$0
MIDDLE EAST AND NORTH AFRICA - ALGERIA, BAHRAIN, DJIBOUTI, EGYPT,	RESEARCH	$8,500	WIRE TRANSFER	$0
EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM	YOUNG INVESTIGATOR FELLOWSHIP AWARD	$27,500	WIRE TRANSFER	$0

Field	Value	IRS element (for citing)
Total501c3 Org	0	Total501c3OrgCnt
Total Other Org	4	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	WALK-RUN-RIDE EVENTS	Event1Nm
Gross Receipts Event1	$789,897	GrossReceiptsEvent1Amt
Charitable Contri Event1	$789,897	CharitableContriEvent1Amt
Non Cash Prizes Event1	$44,986	NonCashPrizesEvent1Amt
Rent Facility Costs Event1	$6,147	RentFacilityCostsEvent1Amt
Food And Beverage Event1	$8,314	FoodAndBeverageEvent1Amt
Entertainment Event1	$12,797	EntertainmentEvent1Amt
Event2	COMEDY FOR A CURE	Event2Nm
Gross Receipts Event2	$464,844	GrossReceiptsEvent2Amt
Charitable Contri Event2	$389,556	CharitableContriEvent2Amt
Gross Revenue Event2	$75,288	GrossRevenueEvent2Amt
Non Cash Prizes Event2	$1,128	NonCashPrizesEvent2Amt
Rent Facility Costs Event2	$28,633	RentFacilityCostsEvent2Amt
Food And Beverage Event2	$44,988	FoodAndBeverageEvent2Amt
Entertainment Event2	$2,969	EntertainmentEvent2Amt
Other Events Total	8	OtherEventsTotalCnt
Gross Receipts Other Events	$183,399	GrossReceiptsOtherEventsAmt
Gross Revenue Other Events	$183,399	GrossRevenueOtherEventsAmt
Non Cash Prizes Other Events	$2,478	NonCashPrizesOtherEventsAmt
Rent Fclty Costs Other Events	$8,699	RentFcltyCostsOtherEventsAmt
Oth Direct Expnss Other Events	$2,993	OthDirectExpnssOtherEventsAmt
Gross Receipts Total	$1,438,140	GrossReceiptsTotalAmt
Charitable Contributions Tot	$1,179,453	CharitableContributionsTotAmt
Gross Revenue Total Events	$258,687	GrossRevenueTotalEventsAmt
Non Cash Prizes Total Events	$48,592	NonCashPrizesTotalEventsAmt
Rent Fclty Costs Total Events	$43,479	RentFcltyCostsTotalEventsAmt
Food And Beverage Total Events	$53,302	FoodAndBeverageTotalEventsAmt
Entertainment Total Events	$15,766	EntertainmentTotalEventsAmt
Oth Direct Expnss Total Events	$2,993	OthDirectExpnssTotalEventsAmt
Direct Expense Summary Events	$164,132	DirectExpenseSummaryEventsAmt
Net Income Summary	$94,555	NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (13 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)	$18,750	$0	RESEARCH GRANT
BRIGHAM & WOMEN'S HOSPITAL
POB 3149	BOSTON	MA	02241	042312909	501(C)(3)	$56,250	$0	RESEARCH GRANT
UNIVERSITY OF VIRGINIA
1001 N EMMET ST	CHARLOTTESVILLE	VA	22903	546001796	501(C)(3)	$18,750	$0	RESEARCH GRANT
NATIONAL ORGANIZATION FOR RARE DISORDERS
DEPT 5430 PO BOX 4110	WOBURN	MA	01888	133223946	501(C)(3)	$125,000	$0	TSC TRAVEL AND LODGING ASSISTANCE PROGRAM
UNIVERSITY OF CALIFORNIA
10889 WILSHIRE BLVD SUITE 700	LOS ANGELES	CA	90095	956006143	501(C)(3)	$20,000	$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)	$75,000	$0	RESEARCH GRANT	CODE 8725
UNIVERSITY OF CALIFORNIA IRVINE
228 ALDRICH HALL	IRVINE	CA	92697	952226406	501(C)(3)	$18,750	$0	RESEARCH GRANT
UNIVERSITY OF MARYLAND BALTIMORE
PO BOX 41428	BALTIMORE	MD	21203	526002033	501(C)(3)	$56,250	$0	RESEARCH GRANT
UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER
5323 HARRY HINES BLVD	DALLAS	TX	75390	756002868	501(C)(3)	$56,250	$0	RESEARCH GRANT
UNIVERSITY OF TEXAS DALLAS
800 WEST CAMPBEL ROAD SP2 27	RICHARDSON	TX	75080	751305566	501(C)(3)	$18,750	$0	RESEARCH GRANT
UNIVERSITY OF ALABAMA BIRMINGHAM
1720 2ND AVE SOUTH AB990	BIRMINGHAM	AL	32294	636005396	501(C)(3)	$91,649	$0	RESEARCH GRANT
UNIVERSITY OF NEW ENGLAND
11 HILLS BEACH RD ROOM 207	BIDDEFORD	ME	04005	010211810	501(C)(3)	$20,000	$0	RESEARCH GRANT
BOSTON CHILDREN'S HOSPITAL
PO BOX 414413	BOSTON	MA	02241	042774441	501(C)(3)	$57,409	$0	RESEARCH GRANT

Field	Value	IRS element (for citing)
Total501c3 Org	13	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 $37 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 (4 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	$214,711	$0	$22,497	$0	$0	$0	$7,291	$0	$19,272	$0	$263,771	$0	$0	$0
KARI LUTHER ROSBECK
PRESIDENT & CEO	$201,924	$2,040	$21,822	$220	$0	$0	$7,012	$0	$22,405	$0	$253,163	$2,260	$0	$0
DEAN RAGER-AGUIAR
VICE PRESIDENT, TRANSLATIONAL RESEAR	$159,369	$0	$18,356	$0	$0	$0	$5,660	$0	$22,431	$0	$205,816	$0	$0	$0
CYNTHIA ARCURI
CHIEF FINANCIAL OFFICER	$161,389	$8,494	$15,600	$821	$0	$0	$5,588	$0	$3,894	$0	$186,471	$9,315	$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, LISA MOSS, AND ASHLEY POUNDERS 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, LISA MOSS, AND ASHLEY POUNDERS ALL HAVE INCENTIVE COMPENSATION EQUAL TO A PERCENTAGE OF THEIR SALARIES BASED ON KEY PERFORMANCE OBJECTIVES AS ESTABLISHED BY THEIR COMPENSATION COMMITTEE.

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (11 entries)

Form And Line ReferenceFormAndLineReferenceDesc	ExplanationExplanationTxt
FORM 990, PART III, LINE 4A, DESCRIPTION OF PROGRAM SERVICE:	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. IN 2023, TWO NEW INDUSTRY MEMBERS JOINED THE CONSORTIUM WITH A TOTAL OF 9 ACTIVE INDUSTRY MEMBERS AT THE END OF THE YEAR. THE CONSORTIUM HAS HAD 22 COMPANY MEMBERS SINCE 2016. 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 17 UNIQUE COMPOUNDS IN 2023, RAISING THE TOTAL TESTED TO 82 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. THE PREVENT TRIAL PREVENTING EPILEPSY USING VIGABATRIN IN INFANTS WITH TSCWAS THE FIRST PREVENTATIVE TRIAL IN THE UNITED STATES FOR ANY FORM OF EPILEPSY. INITIAL RESULTS FROM THE STUDY WERE REPORTED THIS YEAR. IN THE PREVENT TRIAL, INFANTS WITH TSC RECEIVED REGULAR EEG MONITORING AND THOSE WHO DEVELOPED EEG ABNORMALITIES WERE PLACED ON EITHER VIGABATRIN (SUPPLIED BY LUNDBECK) OR A PLACEBO. ANY INFANT WHO SUBSEQUENTLY DEVELOPED CLINICAL SEIZURES WAS IMMEDIATELY PLACED ON STANDARD TREATMENT. RESULTS OF THE STUDY SHOWED THAT PREVENTATIVE TREATMENT WITH VIGABATRIN BEGINNING WHEN EEG BIOMARKER CHANGES WERE OBSERVED DELAYED THE ONSET AND LOWERED THE OVERALL OCCURRENCE OF INFANTILE SPASMS IN INFANTS WITH TSC. HOWEVER, THERE WAS NO SIGNIFICANT DIFFERENCE BETWEEN THE TREATMENT GROUP AND THE PLACEBO GROUP IN TERMS OF DRUG-RESISTANT EPILEPSY, FOCAL SEIZURES, OR COGNITIVE AND BEHAVIORAL OUTCOMES AT TWO YEARS OF AGE. IN THIS TRIAL, THE BIGGEST PREDICTOR OF POORER DEVELOPMENTAL OUTCOMES WAS THE AGE AT WHICH THE EEG BIOMARKER CHANGES OCCURRED: THOSE INFANTS WHOSE EEG CHANGES OCCURRED PRIOR TO SEVEN MONTHS OF AGE HAD, ON AVERAGE, LOWER COGNITIVE AND BEHAVIORAL SCORES THAN THOSE WHOSE EEG CHANGES OCCURRED LATER, REGARDLESS OF TREATMENT VIA VIGABATRIN VERSUS PLACEBO. THIS SUGGESTS THAT RAPID DIAGNOSIS OF TSC IN INFANTS, PRIOR TO HAVING ANY SEIZURES, FOLLOWED BY A CLOSE MONITORING AND RAPID INITIATION OF TREATMENT WHEN SEIZURES BEGIN IS CRITICAL FOR ENSURING THE BEST OUTCOMES POSSIBLE. MORE DETAILS ABOUT THIS STUDY ARE ONLINE AT WWW.CLINICALTRIALS.GOV/CT2/SHOW/NCT02849457. IMMEDIATELY AFTER THE PREVENT TRIAL ENROLLMENT COMPLETED, A SIMILAR CLINICAL TRIAL BEGAN ENROLLING NEWBORNS WITH TSC BEFORE THE ONSET OF SEIZURES TO TEST THE EFFECTS OF SIROLIMUS ON PREVENTING OR DELAYING SEIZURE ONSET. THE STOPPING TSC ONSET AND PROGRESSION 2 (STOP-2) TRIAL ENROLLED FIVE INFANTS AT CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER AS AN INITIAL SAFETY STUDY. THE SECOND STAGE OF THE TRIAL IS NOW CALLED "SIROLIMUS TSC EPILEPSY PREVENTION STUDY (TSC-STEPS) AND THE TSC ALLIANCE HAS CONTRIBUTED $200,000 TO ENABLE THE TRIAL TO BE EXPANDED TO ADDITIONAL SITES ACROSS THE COUNTRY. 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 2021, THE TSC ALLIANCE AWARDED A TWO-YEAR CLINICAL RESEARCH TSC-DSC FELLOWSHIP TO FELIX CHAN, PHD, AT BROWN UNIVERSITY WHO MOVED IN 2022 TO ASTON UNIVERSITY IN BIRMINGHAM, ENGLAND.
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 2023, THE TSC ALLIANCE 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 15 COMMUNITY REGIONS, LED BY MORE THAN 150 DEDICATED LEADERS THROUGHOUT THE UNITED STATES. THE COMMUNITY PROGRAMS TEAM INVESTED MORE THAN 900 TRAINING HOURS TO OUR LEADERS, TO ENSURE THEY WERE WELL EQUIPPED TO SUPPORT AND EMPOWER THE TSC COMMUNITY. AS A RESULT, WE PROVIDED 4,278 PEER-TO-PEER SUPPORT ENGAGEMENTS AND FACILITATED 50 SCHOOL MEETINGS, WHICH INVOLVED TSC 101 TRAINING AND IEP CONSULTATIONS. IN ADDITION, TWO "ASK AN ADVOCATE" WEBINARS ATTRACTED 94 REGISTRANTS. THE COMMUNITY PROGRAMS TEAM COLLABORATED WITH KEY STAFF TO HOST SEVEN RESEARCH AND CORPORATE PARTNER WEBINARS. THESE WEBINARS ATTRACTED 312 LIVE ATTENDEES AND GARNERED 832 RECORDED VIEWS, WITH 801 LANDING PAGE VIEWS AS OF DECEMBER 31, 2023. THE TSC ALLIANCE ALSO PARTNERED WITH THE LAM FOUNDATION TO CO-HOST FOUR EDUCATIONAL CONFERENCE SERIES HELD IN SEATTLE, WA; DENVER, CO; BIRMINGHAM, AL; WASHINGTON, DC. THESE CONFERENCES ATTRACTED 350-PLUS 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 2023, THE TOOL HAD 2,379 USERS. EIGHT INDIVIDUALS OR FAMILIES WERE ALSO SUPPORTED FOR MEDICATION ACCESS ISSUES VIA OUR TSC NAVIGATOR PROGRAM DURING 2023, DOWN FROM 55 IN 2022, 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 2023, THE TSC ALLIANCE PRODUCED TWO ISSUES OF ITS NATIONAL MAGAZINE, PERSPECTIVE, WHICH IS MAILED TO APPROXIMATELY 18,500 CONSTITUENTS AS WELL AS POSTED ON THE WEBSITE. THE TSC ALLIANCE'S PODCAST SERIES, CALLED TSC NOW, PRODUCED EIGHT EPISODES WITH 2,180 TOTAL LISTENS. FIVE ISSUES OF THE ELECTRONIC TSC MATTERS NEWSLETTER WERE DISTRIBUTED TO 17,514 RECIPIENTS. THE TSC ALLIANCE'S WEBSITE INCREASES AWARENESS AND PROVIDES EXTENSIVE EDUCATION THROUGH A MONTHLY AVERAGE OF 26,916 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 10,800 MEMBERS FROM AROUND THE WORLD, WHILE ITS TWITTER ACCOUNT HAS 2,684 FOLLOWERS AND INSTAGRAM HAS 3,432 FOLLOWERS. TO INCREASE PUBLIC AWARENESS, THE TSC ALLIANCE PARTICIPATED IN THE 11TH 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 812 MILLION 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 2021. 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 2023: BOARD MEMBER MUSTAFA SAHIN, PH.D., M.D., IS EMPLOYED AT BOSTON CHILDREN'S HOSPITAL, WHICH RECEIVED $57,409 IN GRANTS AND $6,300 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 $3,420 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 RECEIVED $91,649 IN GRANTS AND $9,010 IN FEES FOR SERVICES FOR PARTICIPATION IN THE TSC NATURAL HISTORY DATABASE. BOARD MEMBER AND IMMEDIATE PAST CHAIR PETER CRINO, MD, PHD, IS CHAIR OF THE DEPARTMENT OF NEUROLOGY AT THE UNIVERSITY OF MD, WHICH RECIEVED $56,250 OF GRANT PAYMENTS."
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.
FORM 990 AMENDED RETURN	THE FORM 990 WAS AMENDED TO INCLUDE THE JOINT COST ALLOCATION THAT WAS INADVERTENTLY LEFT OFF OF PART IX LINE 26.

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	$572,625	InvolvedAmt
Method Of Amount Determination	ACTUAL CASH RECEIVED	MethodOfAmountDeterminationTxt