NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC: Form 990, tax year 2022

View the entire original 990 at ProPublica ↗

Organization: NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC (EIN 95-3018799)
Tax period: 2022-01-01 to 2022-12-31
Filed: 2023-04-14
IRS object ID: 202301049349301205
Schema version: 2022v5.0
Note: A later return for the same period supersedes this one.
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	2023-04-14T10:22:30-05:00	ReturnTs
Tax Period End	2022-12-31	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	2022-01-01	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	2023-04-14	SignatureDt
Discuss With Paid Preparer	Yes (1)	DiscussWithPaidPreparerInd

Signing Officer SigningOfficerGrp

Person Full Name PersonFullName

Field	Value	IRS element (for citing)
Person First	KARI	PersonFirstNm
Person Last	ROSBECK	PersonLastNm

Field	Value	IRS element (for citing)
SSN	999009999	SSN

Field	Value	IRS element (for citing)
IRS Responsible Prty Info Curr	0	IRSResponsiblePrtyInfoCurrInd

Preparer Person PreparerPersonGrp

Field	Value	IRS element (for citing)
Preparer Person	ERIN CRANMER	PreparerPersonNm
PTIN	P01712644	PTIN
Phone	2023319880	PhoneNum

Additional Filer Information AdditionalFilerInformation

Trusted Customer TrustedCustomerGrp

Field	Value	IRS element (for citing)
Trusted Customer	3	TrustedCustomerCd
Authentication Assurance Level	AAL1	AuthenticationAssuranceLevelCd
Identity Assurance Level	IAL1	IdentityAssuranceLevelCd

Field	Value	IRS element (for citing)
Tax	2022	TaxYr
Build TS	2023-04-26 12:10:37Z	BuildTS

Form 990 IRS990

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	$9,035,766	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	FINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THOSE AFFECTED.	ActivityOrMissionDesc
Voting Members Governing Body	30	VotingMembersGoverningBodyCnt
Voting Members Independent	30	VotingMembersIndependentCnt
Total Employee	27	TotalEmployeeCnt
Total Volunteers	2534	TotalVolunteersCnt
Total Gross UBI	$0	TotalGrossUBIAmt
Net Unrelated Bus Txbl Incm	$0	NetUnrelatedBusTxblIncmAmt
PY Contributions Grants	$5,769,053	PYContributionsGrantsAmt
CY Contributions Grants	$7,016,851	CYContributionsGrantsAmt
PY Program Service Revenue	$2,234,262	PYProgramServiceRevenueAmt
CY Program Service Revenue	$2,720,317	CYProgramServiceRevenueAmt
PY Investment Income	$5,670	PYInvestmentIncomeAmt
CY Investment Income	$2,636	CYInvestmentIncomeAmt
PY Other Revenue	$1,007,002	PYOtherRevenueAmt
CY Other Revenue	-$830,262	CYOtherRevenueAmt
PY Total Revenue	$9,015,987	PYTotalRevenueAmt
CY Total Revenue	$8,909,542	CYTotalRevenueAmt
PY Grants And Similar Paid	$948,236	PYGrantsAndSimilarPaidAmt
CY Grants And Similar Paid	$1,032,155	CYGrantsAndSimilarPaidAmt
PY Benefits Paid To Members	$0	PYBenefitsPaidToMembersAmt
CY Benefits Paid To Members	$0	CYBenefitsPaidToMembersAmt
PY Salaries Comp Emp Bnft Paid	$2,455,940	PYSalariesCompEmpBnftPaidAmt
CY Salaries Comp Emp Bnft Paid	$2,896,346	CYSalariesCompEmpBnftPaidAmt
PY Total Prof Fndrsng Expns	$0	PYTotalProfFndrsngExpnsAmt
CY Total Prof Fndrsng Expns	$0	CYTotalProfFndrsngExpnsAmt
CY Total Fundraising Expense	$1,133,515	CYTotalFundraisingExpenseAmt
PY Other Expenses	$3,465,386	PYOtherExpensesAmt
CY Other Expenses	$4,135,183	CYOtherExpensesAmt
PY Total Expenses	$6,869,562	PYTotalExpensesAmt
CY Total Expenses	$8,063,684	CYTotalExpensesAmt
PY Revenues Less Expenses	$2,146,425	PYRevenuesLessExpensesAmt
CY Revenues Less Expenses	$845,858	CYRevenuesLessExpensesAmt
Total Assets BOY	$14,046,866	TotalAssetsBOYAmt
Total Assets EOY	$14,827,937	TotalAssetsEOYAmt
Total Liabilities BOY	$2,437,880	TotalLiabilitiesBOYAmt
Total Liabilities EOY	$2,373,091	TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY	$11,608,986	NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY	$12,454,846	NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part III	Yes (X)	InfoInScheduleOPartIIIInd
Mission	THE NATIONAL TUBEROUS SCLEROSIS ASSOCIATION, D/B/A TSC ALLIANCE, IS DEDICATED TO FINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THOSE AFFECTED.	MissionDesc
Significant New Program Srvc	0	SignificantNewProgramSrvcInd
Significant Change	0	SignificantChangeInd
Expense	$3,793,333	ExpenseAmt
Grant	$1,032,155	GrantAmt
Revenue	$2,010,425	RevenueAmt
Desc	RESEARCH PROGRAMS. SEE SCHEDULE O FOR FULL PROGRAM DESCRIPTION.	Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

Field	Value	IRS element (for citing)
Expense	$1,701,258	ExpenseAmt
Desc	SUPPORT SERVICES. SEE SCHEDULE O FOR FULL PROGRAM DESCRIPTION.	Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

Field	Value	IRS element (for citing)
Expense	$520,059	ExpenseAmt
Desc	PUBLIC HEALTH. SEE SCHEDULE O FOR FULL PROGRAM DESCRIPTION.	Desc

Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp (2 entries)

ExpenseExpenseAmt	DescDesc	RevenueRevenueAmt
$162,724	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 MISSOURI AND MARYLAND, RESULTING IN AT LEAST $1.1 MILLION IN STATE APPROPRIATIONS. ADDITIONALLY, ALABAMA HELD THEIR FIRST ADVOCACY PROCLAMATION DAY WITH THEIR GOVERNOR 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 2022. MORE THAN 204 PEOPLE FROM 42 STATES REGISTERED TO PARTICIPATE IN THE VIRTUAL MARCH ON CAPITOL HILL. ADVOCATES MADE VIRTUAL APPOINTMENTS TO ADVOCATE FOR $10 MILLION IN FUNDING FOR THE TSCRP. THE HOUSE TSCRP DEAR COLLEAGUE LETTER SPONSORED BY REPRESENTATIVES MULLIN (R-OK) AND RASKIN (D-MD) CLOSED WITH 205 SIGNERS. THE SENATE LETTER SPONSORED BY SENATORS CRAMER (R-ND) AND HEINRICH (D-NM) CLOSED WITH 35 SIGNERS. TOTAL FUNDING FOR THE TSCRP HAS BEEN $113 MILLION SINCE 2002, INCLUDING AN $8 MILLION APPROPRIATION APPROVED IN DECEMBER 2022 FOR FY23. 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 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. IN DECEMBER, THERAPEUTIC ADVANCES IN RARE DISEASE PUBLISHED "RACIAL DIFFERENCES IN THE DERMATOLOGICAL MANIFESTATIONS OF TUBEROUS SCLEROSIS COMPLEX AND THE POTENTIAL EFFECTS ON DIAGNOSIS AND CARE," TO RAISE AWARENESS OF DERMATOLOGICAL MANIFESTATIONS ASSOCIATED WITH TSC, COMPARE THEIR APPEARANCE BY RACE, AND CONSIDER HOW RECOGNITION OF THESE FEATURES COULD IMPACT DIAGNOSIS AND TREATMENT OF TSC.THE TSC ALLIANCE PARTICIPATED IN OR PRESENTED AT 28 PROFESSIONAL MEETINGS IN 2022 INCLUDING TANDEM CONSORTIUM MEETING, NOBELPHARMA TOWN HALL, MALLINCKRODT AD BOARD, NAPNAP, ACMG, TAND MINI-SYMPOSIUM (TANDEM), MUSCULAR DYSTROPHY COORDINATING COMMITTEE SPRING 2022 MEETING, AMERICAN THORACIC SOCIETY 2022 INTERNATIONAL CONFERENCE, RARE DISEASES INTERNATIONAL: 75TH WORLD HEALTH ASSEMBLY SIDE EVENT: NETWORKING, INTERAGENCY COLLABORATIVE TO ADVANCE RESEARCH IN EPILEPSY (ICARE) ANNUAL MEETING, NINDS NONPROFIT FORUM, WORLD TSC CONFERENCE, LAMPOSIUM, GLOBAL GENES RARE SUMMIT, HRA FALL 2022 MEMBERS MEETING, RDCRN FALL MEETING, MN PHARM CONF, ACHG, GLOBAL GENES ATLANTA, ISAN MEMBERSHIP MEETING, EVERYLIFE NBS BOOTCAMP, TSCRP, AMERICAN EPILEPSY SOCIETY, ATS PAR PLANNING MEETING, ARPA-H RARE DISEASE PLANNING MEETING, TANDEM SOUTH AFRICA, ATS PAR LUNG WEEK, AND PAME.
$105,440	OTHER PROGRAM SERVICES	-$1,195,869

Field	Value	IRS element (for citing)
Total Other Prog Srvc Expense	$268,164	TotalOtherProgSrvcExpenseAmt
Total Other Prog Srvc Revenue	-$1,195,869	TotalOtherProgSrvcRevenueAmt
Total Program Service Expenses	$6,282,814	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	29	IRPDocumentCnt
IRP Document W2 G	0	IRPDocumentW2GCnt
Backup Wthld Compliance	Yes (1)	BackupWthldComplianceInd
Employee	27	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 (39 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
PETER CRINO MD PHD
CHAIR	5.00	Yes (X)	Yes (X)	$0	$0	$0
WILLIAM JOSEPH
VICE CHAIR	5.00	Yes (X)	Yes (X)	$0	$0	$0	1.00
PAUL WAXLAX
TREASURER	5.00	Yes (X)	Yes (X)	$0	$0	$0	1.00
JESSICA KREFTING
SECRETARY	5.00	Yes (X)	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
EDWARD BURKHALTER
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
LISA CARLTON
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
MARK CARROLL
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
SARA CHIEFFO
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
DAVID COIT
BOARD MEMBER	2.00	Yes (X)		$0	$0	$0
MARGARET COX
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
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
LESLEY HOLMES
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
BRITTANY SMITH
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)	$217,716	$2,756	$28,910	1.00
CYNTHIA ARCURI
CHIEF FINANCIAL OFFICER	42.00		Yes (X)	$146,692	$11,324	$9,841	3.00
RICHARD GOLLUB
CHIEF FINANCIAL OFFICER	42.00		Yes (X)	$80,583	$4,241	$8,795	3.00
STEVEN ROBERDS
CHIEF SCIENTIFIC OFFICER	45.00			$233,206	$0	$26,309		Yes (X)
DEAN RAGER-AGUIAR
VICE PRESIDENT, TRANSLATIONAL RESEARCH	45.00			$164,261	$0	$27,214			Yes (X)
LISA MOSS
VICE PRESIDENT, DONOR RELATIONS	45.00			$122,204	$0	$23,858			Yes (X)
JAYE ISHAM
SENIOR VICE PRESIDENT, STRATEGIC COMMUNICATIONS	45.00			$133,868	$0	$4,136			Yes (X)
APRIL COOPER
VICE PRESIDENT, COMMUNITY PROGRAMS	45.00			$114,370	$0	$25,298			Yes (X)
ASHLEY POUNDERS
DIRECTOR OF MEDICAL AFFAIRS	45.00			$111,519	$0	$13,976			Yes (X)

Field	Value	IRS element (for citing)
Total Reportable Comp From Org	$1,324,419	TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org	$18,321	TotReportableCompRltdOrgAmt
Total Other Compensation	$168,337	TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K	8	IndivRcvdGreaterThan100KCnt
Former Ofcr Employees Listed	0	FormerOfcrEmployeesListedInd
Total Comp Greater Than150 K	Yes (1)	TotalCompGreaterThan150KInd
Compensation From Other Srcs	0	CompensationFromOtherSrcsInd

Contractor Compensation ContractorCompensationGrp (4 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	$1,194,468
MMS HOLDINGS INC
6880 COMMERCE BLVD	CANTON	MI	48187	RESEARCH LAB SERVICES	$121,387
CAVAROCCHI RUSCIO DENNIS & ASSOCIATES
600 MARYLAND AVE SW SUITE 220 EAST	WASHINGTON	DC	20024	GOVERNMENT RELATIONS	$116,364
GEBEN COMMUNICATIONS
143 E MAIN STREET SUITE 200	COLUMBUS	OH	43215	MARKING CONSULTING	$102,875

Field	Value	IRS element (for citing)
Cntrct Rcvd Greater Than100 K	4	CntrctRcvdGreaterThan100KCnt
Federated Campaigns	$51,247	FederatedCampaignsAmt
Membership Dues	$4,057	MembershipDuesAmt
Fundraising	$1,068,063	FundraisingAmt
Related Organizations	$308,000	RelatedOrganizationsAmt
All Other Contributions	$5,585,484	AllOtherContributionsAmt
Total Contributions	$7,016,851	TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp (2 entries)

DescDesc	BusinessBusinessCd	Total Revenue ColumnTotalRevenueColumnAmt	Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt	ExclusionExclusionAmt
CONTRACT REVENUE	900099	$1,906,672	$1,906,672
CONFERENCE REVENUE	900099	$813,645	$103,753	$709,892

Field	Value	IRS element (for citing)
Total Program Service Revenue	$2,720,317	TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

Field	Value	IRS element (for citing)
Total Revenue Column	$2,382	TotalRevenueColumnAmt
Exclusion	$2,382	ExclusionAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

Field	Value	IRS element (for citing)
Securities	$1,000	SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

Field	Value	IRS element (for citing)
Securities	$746	SecuritiesAmt

Gain Or Loss GainOrLossGrp

Field	Value	IRS element (for citing)
Securities	$254	SecuritiesAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

Field	Value	IRS element (for citing)
Total Revenue Column	$254	TotalRevenueColumnAmt
Exclusion	$254	ExclusionAmt

Field	Value	IRS element (for citing)
Fundraising Gross Income	$491,085	FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event	$1,068,063	ContriRptFundraisingEventAmt
Fundraising Direct Expenses	$125,478	FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

Field	Value	IRS element (for citing)
Total Revenue Column	$365,607	TotalRevenueColumnAmt
Exclusion	$365,607	ExclusionAmt

Other Revenue Misc OtherRevenueMiscGrp

Field	Value	IRS element (for citing)
Desc	CHANGE IN INTEREST OF AFFILIATE	Desc
Business	900099	BusinessCd
Total Revenue Column	-$1,211,361	TotalRevenueColumnAmt
Related Or Exempt Func Income	-$1,211,361	RelatedOrExemptFuncIncomeAmt

Miscellaneous Revenue MiscellaneousRevenueGrp

Field	Value	IRS element (for citing)
Total Revenue Column	$15,492	TotalRevenueColumnAmt
Related Or Exempt Func Income	$15,492	RelatedOrExemptFuncIncomeAmt

Field	Value	IRS element (for citing)
Other Revenue Total	-$1,195,869	OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

Field	Value	IRS element (for citing)
Total Revenue Column	$8,909,542	TotalRevenueColumnAmt
Related Or Exempt Func Income	$814,556	RelatedOrExemptFuncIncomeAmt
Unrelated Business Revenue	$0	UnrelatedBusinessRevenueAmt
Exclusion	$1,078,135	ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

Field	Value	IRS element (for citing)
Total	$857,545	TotalAmt
Program Services	$857,545	ProgramServicesAmt

Foreign Grants ForeignGrantsGrp

Field	Value	IRS element (for citing)
Total	$174,610	TotalAmt
Program Services	$174,610	ProgramServicesAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

Field	Value	IRS element (for citing)
Total	$726,880	TotalAmt
Program Services	$439,838	ProgramServicesAmt
Management And General	$125,197	ManagementAndGeneralAmt
Fundraising	$161,845	FundraisingAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

Field	Value	IRS element (for citing)
Total	$1,744,717	TotalAmt
Program Services	$1,055,732	ProgramServicesAmt
Management And General	$300,508	ManagementAndGeneralAmt
Fundraising	$388,477	FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

Field	Value	IRS element (for citing)
Total	$47,394	TotalAmt
Program Services	$27,339	ProgramServicesAmt
Management And General	$8,117	ManagementAndGeneralAmt
Fundraising	$11,938	FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

Field	Value	IRS element (for citing)
Total	$202,902	TotalAmt
Program Services	$117,658	ProgramServicesAmt
Management And General	$34,771	ManagementAndGeneralAmt
Fundraising	$50,473	FundraisingAmt

Payroll Taxes PayrollTaxesGrp

Field	Value	IRS element (for citing)
Total	$174,453	TotalAmt
Program Services	$102,086	ProgramServicesAmt
Management And General	$29,928	ManagementAndGeneralAmt
Fundraising	$42,439	FundraisingAmt

Fees For Services Legal FeesForServicesLegalGrp

Field	Value	IRS element (for citing)
Total	$29,466	TotalAmt
Program Services	$17,750	ProgramServicesAmt
Management And General	$3,330	ManagementAndGeneralAmt
Fundraising	$8,386	FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

Field	Value	IRS element (for citing)
Total	$26,964	TotalAmt
Program Services	$16,243	ProgramServicesAmt
Management And General	$3,047	ManagementAndGeneralAmt
Fundraising	$7,674	FundraisingAmt

Fees For Services Lobbying FeesForServicesLobbyingGrp

Field	Value	IRS element (for citing)
Total	$116,364	TotalAmt
Program Services	$70,096	ProgramServicesAmt
Management And General	$13,151	ManagementAndGeneralAmt
Fundraising	$33,117	FundraisingAmt

Fees For Services Other FeesForServicesOtherGrp

Field	Value	IRS element (for citing)
Total	$245,601	TotalAmt
Program Services	$147,945	ProgramServicesAmt
Management And General	$27,758	ManagementAndGeneralAmt
Fundraising	$69,898	FundraisingAmt

Advertising AdvertisingGrp

Field	Value	IRS element (for citing)
Total	$8,650	TotalAmt
Program Services	$5,841	ProgramServicesAmt
Management And General	$19	ManagementAndGeneralAmt
Fundraising	$2,790	FundraisingAmt

Office Expenses OfficeExpensesGrp

Field	Value	IRS element (for citing)
Total	$336,605	TotalAmt
Program Services	$179,434	ProgramServicesAmt
Management And General	$20,067	ManagementAndGeneralAmt
Fundraising	$137,104	FundraisingAmt

Information Technology InformationTechnologyGrp

Field	Value	IRS element (for citing)
Total	$201,876	TotalAmt
Program Services	$107,508	ProgramServicesAmt
Management And General	$26,747	ManagementAndGeneralAmt
Fundraising	$67,621	FundraisingAmt

Occupancy OccupancyGrp

Field	Value	IRS element (for citing)
Total	$132,836	TotalAmt
Program Services	$78,280	ProgramServicesAmt
Management And General	$23,002	ManagementAndGeneralAmt
Fundraising	$31,554	FundraisingAmt

Travel TravelGrp

Field	Value	IRS element (for citing)
Total	$196,970	TotalAmt
Program Services	$149,622	ProgramServicesAmt
Management And General	$3,105	ManagementAndGeneralAmt
Fundraising	$44,243	FundraisingAmt

Conferences Meetings ConferencesMeetingsGrp

Field	Value	IRS element (for citing)
Total	$982,138	TotalAmt
Program Services	$937,141	ProgramServicesAmt
Management And General	$6,214	ManagementAndGeneralAmt
Fundraising	$38,783	FundraisingAmt

Interest InterestGrp

Field	Value	IRS element (for citing)
Total	$2,499	TotalAmt
Program Services	$3	ProgramServicesAmt
Management And General	$221	ManagementAndGeneralAmt
Fundraising	$2,275	FundraisingAmt

Depreciation Depletion DepreciationDepletionGrp

Field	Value	IRS element (for citing)
Total	$68,866	TotalAmt
Program Services	$44,740	ProgramServicesAmt
Management And General	$8,315	ManagementAndGeneralAmt
Fundraising	$15,811	FundraisingAmt

Insurance InsuranceGrp

Field	Value	IRS element (for citing)
Total	$11,620	TotalAmt
Program Services	$6,854	ProgramServicesAmt
Management And General	$2,025	ManagementAndGeneralAmt
Fundraising	$2,741	FundraisingAmt

Other Expenses OtherExpensesGrp (3 entries)

DescDesc	TotalTotalAmt	Program ServicesProgramServicesAmt	Management And GeneralManagementAndGeneralAmt	FundraisingFundraisingAmt
PRECLINICAL CONSORTIUM	$1,407,092	$1,407,092
NHD BIOSAMPLE REPOSIT	$321,369	$321,369
DUES AND SUBSCRIPTIONS	$40,210	$16,979	$11,104	$12,127

All Other Expenses AllOtherExpensesGrp

Field	Value	IRS element (for citing)
Total	$6,057	TotalAmt
Program Services	$1,109	ProgramServicesAmt
Management And General	$729	ManagementAndGeneralAmt
Fundraising	$4,219	FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

Field	Value	IRS element (for citing)
Total	$8,063,684	TotalAmt
Program Services	$6,282,814	ProgramServicesAmt
Management And General	$647,355	ManagementAndGeneralAmt
Fundraising	$1,133,515	FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

Field	Value	IRS element (for citing)
BOY	$1,459,324	BOYAmt
EOY	$1,711,209	EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

Field	Value	IRS element (for citing)
BOY	$1,242,438	BOYAmt
EOY	$694,859	EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

Field	Value	IRS element (for citing)
BOY	$2,698,495	BOYAmt
EOY	$5,280,316	EOYAmt

Accounts Receivable AccountsReceivableGrp

Field	Value	IRS element (for citing)
BOY	$99,173	BOYAmt
EOY	$181,490	EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

Field	Value	IRS element (for citing)
BOY	$620,148	BOYAmt
EOY	$277,696	EOYAmt

Field	Value	IRS element (for citing)
Land Bldg Equip Cost Or Other Bss	$811,270	LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec	$347,998	LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

Field	Value	IRS element (for citing)
BOY	$437,169	BOYAmt
EOY	$463,272	EOYAmt

Other Assets Total OtherAssetsTotalGrp

Field	Value	IRS element (for citing)
BOY	$7,490,119	BOYAmt
EOY	$6,219,095	EOYAmt

Total Assets TotalAssetsGrp

Field	Value	IRS element (for citing)
BOY	$14,046,866	BOYAmt
EOY	$14,827,937	EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

Field	Value	IRS element (for citing)
BOY	$472,049	BOYAmt
EOY	$891,501	EOYAmt

Deferred Revenue DeferredRevenueGrp

Field	Value	IRS element (for citing)
BOY	$676,798	BOYAmt
EOY	$285,264	EOYAmt

Other Liabilities OtherLiabilitiesGrp

Field	Value	IRS element (for citing)
BOY	$1,289,033	BOYAmt
EOY	$1,196,326	EOYAmt

Total Liabilities TotalLiabilitiesGrp

Field	Value	IRS element (for citing)
BOY	$2,437,880	BOYAmt
EOY	$2,373,091	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	$6,580,605	BOYAmt
EOY	$5,151,339	EOYAmt

Donor Restriction Net Assets DonorRestrictionNetAssetsGrp

Field	Value	IRS element (for citing)
BOY	$5,028,381	BOYAmt
EOY	$7,303,507	EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

Field	Value	IRS element (for citing)
BOY	$11,608,986	BOYAmt
EOY	$12,454,846	EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

Field	Value	IRS element (for citing)
BOY	$14,046,866	BOYAmt
EOY	$14,827,937	EOYAmt

Field	Value	IRS element (for citing)
Info In Schedule O Part XI	Yes (X)	InfoInScheduleOPartXIInd
Reconcilation Revenue Expnss	$845,858	ReconcilationRevenueExpnssAmt
Other Changes In Net Assets	$2	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	$4,105,376	CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years	$5,527,543	CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years	$4,345,011	CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year	$5,769,053	CurrentTaxYearMinus1YearAmt
Current Tax Year	$7,016,851	CurrentTaxYearAmt
Total	$26,763,834	TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

Field	Value	IRS element (for citing)
Current Tax Year Minus4 Years	$4,105,376	CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years	$5,527,543	CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years	$4,345,011	CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year	$5,769,053	CurrentTaxYearMinus1YearAmt
Current Tax Year	$7,016,851	CurrentTaxYearAmt
Total	$26,763,834	TotalAmt

Field	Value	IRS element (for citing)
Substantial Contributors Tot	$4,752,141	SubstantialContributorsTotAmt
Public Support Total170	$22,011,693	PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

Field	Value	IRS element (for citing)
Current Tax Year Minus4 Years	$13,784	CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years	$27,444	CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years	$11,188	CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year	$3,809	CurrentTaxYearMinus1YearAmt
Current Tax Year	$2,382	CurrentTaxYearAmt
Total	$58,607	TotalAmt

Other Income170 OtherIncome170Grp

Field	Value	IRS element (for citing)
Current Tax Year Minus4 Years	$1,243	CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years	$714	CurrentTaxYearMinus3YearsAmt
Current Tax Year	$15,492	CurrentTaxYearAmt
Total	$17,449	TotalAmt

Field	Value	IRS element (for citing)
Total Support	$26,839,890	TotalSupportAmt
Gross Receipts Rltd Activities	$9,192,344	GrossReceiptsRltdActivitiesAmt
Public Support CY170	0.82010	PublicSupportCY170Pct
Public Support PY170	0.84730	PublicSupportPY170Pct
Thirty Thr Pct Suprt Tests CY170	Yes (X)	ThirtyThrPctSuprtTestsCY170Ind

Form990 Schedule A Part VI Form990ScheduleAPartVIGrp

Field	Value	IRS element (for citing)
Form And Line Reference	SCHEDULE A, PART II, LINE 10, EXPLANATION FOR OTHER INCOME:	FormAndLineReferenceDesc
Explanation	INCOME FROM ACTIVITIES NOT REGULARLY CARRIED ON 2017 AMOUNT: $ 642. 2018 AMOUNT: $ 1,243. 2019 AMOUNT: $ 714	ExplanationTxt

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	$1,395	FilingOrganizationsTotalAmt

Total Direct Lobbying TotalDirectLobbyingGrp

Field	Value	IRS element (for citing)
Filing Organizations Total	$161,376	FilingOrganizationsTotalAmt

Total Lobbying Expend TotalLobbyingExpendGrp

Field	Value	IRS element (for citing)
Filing Organizations Total	$162,771	FilingOrganizationsTotalAmt

Other Exempt Purpose Expend OtherExemptPurposeExpendGrp

Field	Value	IRS element (for citing)
Filing Organizations Total	$7,856,589	FilingOrganizationsTotalAmt

Total Exempt Purpose Expend TotalExemptPurposeExpendGrp

Field	Value	IRS element (for citing)
Filing Organizations Total	$8,019,360	FilingOrganizationsTotalAmt

Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp

Field	Value	IRS element (for citing)
Filing Organizations Total	$550,968	FilingOrganizationsTotalAmt

Grassroots Nontaxable GrassrootsNontaxableGrp

Field	Value	IRS element (for citing)
Filing Organizations Total	$137,742	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	$445,393	CurrentYearMinus3Amt
Current Year Minus2	$423,685	CurrentYearMinus2Amt
Current Year Minus1	$497,465	CurrentYearMinus1Amt
Current Year	$550,968	CurrentYearAmt
Total	$1,917,511	TotalAmt

Field	Value	IRS element (for citing)
Lobbying Ceiling	$2,876,267	LobbyingCeilingAmt

Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp

Field	Value	IRS element (for citing)
Current Year Minus3	$165,226	CurrentYearMinus3Amt
Current Year Minus2	$123,014	CurrentYearMinus2Amt
Current Year Minus1	$154,139	CurrentYearMinus1Amt
Current Year	$162,771	CurrentYearAmt
Total	$605,150	TotalAmt

Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp

Field	Value	IRS element (for citing)
Current Year Minus3	$111,348	CurrentYearMinus3Amt
Current Year Minus2	$105,921	CurrentYearMinus2Amt
Current Year Minus1	$124,366	CurrentYearMinus1Amt
Current Year	$137,742	CurrentYearAmt
Total	$479,377	TotalAmt

Field	Value	IRS element (for citing)
Grassroots Ceiling	$719,066	GrassrootsCeilingAmt

Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp

Field	Value	IRS element (for citing)
Current Year Minus3	$2,491	CurrentYearMinus3Amt
Current Year Minus2	$895	CurrentYearMinus2Amt
Current Year Minus1	$1,127	CurrentYearMinus1Amt
Current Year	$1,395	CurrentYearAmt
Total	$5,908	TotalAmt

Schedule D IRS990ScheduleD

CY Endwmt Fund CYEndwmtFundGrp

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 Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp

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 Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp

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 Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp

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

CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp

Field	Value	IRS element (for citing)
Beginning Year Balance	$5,655,555	BeginningYearBalanceAmt
Contributions	$82,346	ContributionsAmt
Investment Earnings Or Losses	-$439,321	InvestmentEarningsOrLossesAmt
Other Expenditures	$50,000	OtherExpendituresAmt
Administrative Expenses	$54,646	AdministrativeExpensesAmt
End Year Balance	$5,193,934	EndYearBalanceAmt

Field	Value	IRS element (for citing)
Board Designated Balance EOY	0.84257	BoardDesignatedBalanceEOYPct
Prmnnt Endowment Balance EOY	0.15127	PrmnntEndowmentBalanceEOYPct
Term Endowment Balance EOY	0.00616	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	$112,318	DepreciationAmt
Book Value	$336,954	BookValueAmt

Equipment EquipmentGrp

Field	Value	IRS element (for citing)
Other Cost Or Other Basis	$281,726	OtherCostOrOtherBasisAmt
Depreciation	$155,408	DepreciationAmt
Book Value	$126,318	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	$463,272	TotalBookValueLandBuildingsAmt

Other Assets Org OtherAssetsOrgGrp (2 entries)

DescDesc	Book ValueBookValueAmt
NET ASSETS OF AFFILIATE	$5,500,387
OPERATING LEASE RIGHT-OF-USE ASSET	$718,708

Field	Value	IRS element (for citing)
Total Book Value Other Assets	$6,219,095	TotalBookValueOtherAssetsAmt

Other Liabilities Org OtherLiabilitiesOrgGrp (2 entries)

DescDesc	AmtAmt
OPERATING LEASE LIABILITY	$1,189,842
DUE FROM RELATED PARTY	$6,484

Field	Value	IRS element (for citing)
Total Liability	$1,196,326	TotalLiabilityAmt
Total Rev Etc Audited Fincl Stmt	$8,919,542	TotalRevEtcAuditedFinclStmtAmt
Donated Services And Use Fclts	$10,000	DonatedServicesAndUseFcltsAmt
Revenue Not Reported	$10,000	RevenueNotReportedAmt
Revenue Subtotal	$8,909,542	RevenueSubtotalAmt
Revenue Not Reported Fincl Stmt	$0	RevenueNotReportedFinclStmtAmt
Total Revenue Per Form990	$8,909,542	TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt	$8,199,161	TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts	$10,000	DonatedServicesUseFcltsAmt
Other Expenses Included	-$1	OtherExpensesIncludedAmt
Expenses Not Reported	$9,999	ExpensesNotReportedAmt
Expenses Subtotal	$8,189,162	ExpensesSubtotalAmt
Other Expenses Not Included	-$125,478	OtherExpensesNotIncludedAmt
Expenses Not Rpt Fincl Stmt	-$125,478	ExpensesNotRptFinclStmtAmt
Total Expenses Per Form990	$8,063,684	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 -1.
PART XII, LINE 4B - OTHER ADJUSTMENTS:	FUNDRAISING EXPENSES INCLUDED ON PART VIII -125,478.

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 & GREENLAND)	0	0	GRANTS TO RECIPIENTS LOCATED IN REGION	$118,360
MIDDLE EAST AND NORTH AFRICA	0	0	GRANTS TO RECIPIENTS LOCATED IN REGION	$56,250

Field	Value	IRS element (for citing)
Subtotal Offices	0	SubtotalOfficesCnt
Subtotal Employees	0	SubtotalEmployeesCnt
Continuation Total Office	0	ContinuationTotalOfficeCnt
Continuation Total Employee	0	ContinuationTotalEmployeeCnt
Total Office	0	TotalOfficeCnt
Total Employee	0	TotalEmployeeCnt
Subtotal Spent	$174,610	SubtotalSpentAmt
Continuation Spent	$0	ContinuationSpentAmt
Total Spent	$174,610	TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (5 entries)

RegionRegionTxt	Purpose Of GrantPurposeOfGrantTxt	Cash GrantCashGrantAmt	Manner Of Cash DisbursementMannerOfCashDisbursementTxt	Non Cash AssistanceNonCashAssistanceAmt
EUROPE (INCLUDING ICELAND & GREENLAND)	BIOSAMPLE SEED GRANT AWARD	$14,696	WIRE TRANSFER	$0
EUROPE (INCLUDING ICELAND & GREENLAND)	RESEARCH ON TUBEROUS SCLEROSIS COMPLEX	$17,150	WIRE TRANSFER	$0
MIDDLE EAST AND NORTH AFRICA	RESEARCH	$56,250	WIRE TRANSFER	$0
EUROPE (INCLUDING ICELAND & GREENLAND)	YOUNG INVESTIGATOR FELLOWSHIP AWARD	$78,014	WIRE TRANSFER	$0
EUROPE (INCLUDING ICELAND & GREENLAND)	BIOSAMPLE SEED GRANT AWARD	$8,500	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 (2 entries)

Form And Line ReferenceFormAndLineReferenceDesc	ExplanationExplanationTxt
PART I, LINE 2:	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.
PART III ACCOUNTING METHOD:

Schedule G IRS990ScheduleG

Fundraising Event Information FundraisingEventInformationGrp

Field	Value	IRS element (for citing)
Event1	WALK-RUN-RIDE EVENTS	Event1Nm
Gross Receipts Event1	$765,725	GrossReceiptsEvent1Amt
Charitable Contri Event1	$558,425	CharitableContriEvent1Amt
Gross Revenue Event1	$207,300	GrossRevenueEvent1Amt
Non Cash Prizes Event1	$31,824	NonCashPrizesEvent1Amt
Rent Facility Costs Event1	$991	RentFacilityCostsEvent1Amt
Food And Beverage Event1	$3,490	FoodAndBeverageEvent1Amt
Entertainment Event1	$2,635	EntertainmentEvent1Amt
Event2	COMEDY FOR A CURE	Event2Nm
Gross Receipts Event2	$588,050	GrossReceiptsEvent2Amt
Charitable Contri Event2	$509,638	CharitableContriEvent2Amt
Gross Revenue Event2	$78,412	GrossRevenueEvent2Amt
Non Cash Prizes Event2	$1,654	NonCashPrizesEvent2Amt
Rent Facility Costs Event2	$10,463	RentFacilityCostsEvent2Amt
Food And Beverage Event2	$62,124	FoodAndBeverageEvent2Amt
Entertainment Event2	$4,356	EntertainmentEvent2Amt
Other Events Total	8	OtherEventsTotalCnt
Gross Receipts Other Events	$205,373	GrossReceiptsOtherEventsAmt
Charitable Contri Other Events	$0	CharitableContriOtherEventsAmt
Gross Revenue Other Events	$205,373	GrossRevenueOtherEventsAmt
Non Cash Prizes Other Events	$3,031	NonCashPrizesOtherEventsAmt
Rent Fclty Costs Other Events	$1,428	RentFcltyCostsOtherEventsAmt
Food And Beverage Other Events	$3,156	FoodAndBeverageOtherEventsAmt
Entertainment Other Events	$325	EntertainmentOtherEventsAmt
Gross Receipts Total	$1,559,148	GrossReceiptsTotalAmt
Charitable Contributions Tot	$1,068,063	CharitableContributionsTotAmt
Gross Revenue Total Events	$491,085	GrossRevenueTotalEventsAmt
Non Cash Prizes Total Events	$36,509	NonCashPrizesTotalEventsAmt
Rent Fclty Costs Total Events	$12,882	RentFcltyCostsTotalEventsAmt
Food And Beverage Total Events	$68,770	FoodAndBeverageTotalEventsAmt
Entertainment Total Events	$7,316	EntertainmentTotalEventsAmt
Direct Expense Summary Events	$125,477	DirectExpenseSummaryEventsAmt
Net Income Summary	$365,608	NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

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

Recipient Table RecipientTable (12 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
UNIVERSITY OF CALIFORNIA LOS ANGELES CAMPUS
10889 WILSHIRE BLVD SUITE 700	LOS ANGELES	CA	90095	956006143	501(C)(3)	$13,200	$0	RESEARCH GRANT
CLEMSON UNIVERSITY
391 COLLEGE AVENUE SUITE 301	CLEMSON	SC	29634	576000254	501(C)(3)	$17,624	$0	RESEARCH GRANT
BRIGHAM & WOMEN'S HOSPITAL
POB 3149	BOSTON	MA	02241	042312909	501(C)(3)	$179,892	$0	RESEARCH GRANT
NATIONAL ORGANIZATION FOR RARE DISORDERS
DEPT 5430 PO BOX 4110	WOBURN	MA	01888	133223946	501(C)(3)	$75,000	$0	TSC TRAVEL AND LODGING ASSISTANCE PROGRAM
NATIONWIDE CHILDREN'S HOSPITAL
DEPT 781653 PO BOX 78000	DETROIT	MI	48278	316056230	501(C)(3)	$20,000	$0	RESEARCH GRANT
UNIVERSITY OF VIRGINIA
1001 N EMMET ST	CHARLOTTESVILLE	VA	22903	546001796	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)	$18,750	$0	RESEARCH GRANT	CODE 8725
UNIVERSITY OF MARYLAND BALTIMORE
PO BOX 41428	BALTIMORE	MD	21203	526002033	501(C)(3)	$75,000	$0	RESEARCH GRANT
UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER
5323 HARRY HINES BLVD	DALLAS	TX	75390	756002868	501(C)(3)	$75,000	$0	RESEARCH GRANT
UNIVERSITY OF WASHINGTON
4333 BROOKLYN AVE NE BOX 359475	SEATTLE	WA	98195	916001537	501(C)(3)	$75,000	$0	RESEARCH GRANT
BOSTON CHILDREN'S HOSPITAL
PO BOX 414413	BOSTON	MA	02241	042774441	501(C)(3)	$57,409	$0	RESEARCH GRANT
BROWN UNIVERSITY
69 BROWN STREET BOX 1911	PROVIDENCE	RI	02912	050258809	501(C)(3)	$31,986	$0	RESEARCH GRANT

Field	Value	IRS element (for citing)
Total501c3 Org	12	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 $34 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	$206,593	$0	$26,355	$0	$258	$0	$7,153	$0	$19,156	$0	$259,515	$0	$0	$0
KARI LUTHER ROSBECK
PRESIDENT & CEO	$191,956	$2,430	$25,505	$323	$255	$3	$6,882	$0	$22,028	$0	$246,626	$2,756	$0	$0
DEAN RAGER-AGUIAR
VICE PRESIDENT, TRANSLATIONAL RESEAR	$153,455	$0	$10,668	$0	$138	$0	$5,221	$0	$21,993	$0	$191,475	$0	$0	$0
CYNTHIA ARCURI
CHIEF FINANCIAL OFFICER	$142,007	$10,963	$4,642	$358	$43	$3	$3,199	$0	$6,642	$0	$156,533	$11,324	$0	$0

Supplemental Information Detail SupplementalInformationDetail (2 entries)

Form And Line ReferenceFormAndLineReferenceDesc	ExplanationExplanationTxt
PART I, LINE 5	KARI LUTHER ROSBECK, RICHARD GOLLUB, STEVE ROBERDS, CYNTHIA ARCURI, DEAN AGUIAR, JAYE ISHAM, LISA MOSS, ASHLEY POUNDERS, AND APRIL COOPER 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, RICHARD GOLLUB, STEVE ROBERDS, CYNTHIA ARCURI, DEAN AGUIAR, JAYE ISHAM, LISA MOSS, ASHLEY POUNDERS, AND APRIL COOPER 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	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 $34 MILLION INTO TSC RESEARCH PROJECTS THROUGH GRANTS AND CONTRACTS: $20.1 MILLION IN RESEARCH GRANTS AND POSTDOCTORAL FELLOWSHIPS, $4.8 MILLION INTO THE NATURAL HISTORY DATABASE AND BIOSAMPLE REPOSITORY, $7.9 MILLION INTO THE PRECLINICAL CONSORTIUM, AND $1.3 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. 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 2022, 2,546 PEOPLE WITH TSC WERE ENROLLED IN THE PROJECT FROM AMONG 21 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, 2022, THE TSC BIOSAMPLE REPOSITORY HAS ACQUIRED 2,327 BIOSAMPLES: 834 BLOOD SAMPLES FROM INDIVIDUALS WITH TSC ENROLLED IN THE NHD, 395 BUCCAL SAMPLES FROM INDIVIDUALS WITH TSC ENROLLED IN THE NHD, 174 TISSUE SAMPLES FROM INDIVIDUALS WITH TSC ENROLLED IN THE NHD, 525 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 364 BLOOD SAMPLES VIA MOBILE PHLEBOTOMY. TO ENCOURAGE AND ENABLE MORE RESEARCHERS TO UTILIZE BIOSAMPLES, THE TSC ALLIANCE AWARDED FOUR SEED GRANTS IN 2022, TOTALING $59,324, 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 48 SAMPLES IN 2022, TOTALING 68 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 2022, 69 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. 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 2022, TWO NEW INDUSTRY MEMBERS JOINED THE CONSORTIUM WITH A TOTAL OF 10 ACTIVE INDUSTRY MEMBERS AT THE END OF THE YR
FORM 990, PART III, LINE 4B, DESCRIPTION OF PROGRAM SERVICE:	SUPPORT SERVICES DEVELOPS PROGRAMS AND SERVICES THAT PROVIDE INDIVIDUALS WITH TSC DIRECT ACCESS TO INFORMATION, RESOURCES, AND SPECIALISTS EXPERIENCED IN THE DIAGNOSIS, TREATMENT AND MANAGEMENT OF TSC. IN 2022 THE TSC ALLIANCE FACILITATED 5,164 PEER-TO-PEER SUPPORTS FROM ADULT REGIONAL COORDINATORS (12 VOLUNTEERS IN 8 REGIONS NATIONWIDE), CLINIC AMBASSADORS (14 VOLUNTEERS IN 15 TSC CLINICS AND TSC CENTERS OF EXCELLENCE NATIONWIDE), DEPENDENT ADULT TRANSITION RESOURCE COORDINATORS (28 VOLUNTEERS IN 23 STATES AND PUERTO RICO), EDUCATION PARENT MENTORS (28 VOLUNTEERS IN 19 STATES), AND COMMUNITY ALLIANCE LEADERS (41 VOLUNTEERS IN 27 REGIONS ACROSS THE UNITED STATES) WITH ACTIVE FUTURE LEADERS (8 VOLUNTEERS) WHILE BUILDING A PLACE FOR OUR PAST FUTURE LEADERS TO SERVE AS MENTORS AND SUPPORT (15 VOLUNTEERS) WHO HAVE AGREED TO REMAIN AS LEADERS FOR OTHER YOUNG ADULTS WITH TSC. EDUCATION PARENT MENTORS ATTENDED 29 SCHOOL MEETINGS (IEPS, EVALUATION TEAM MEETINGS, 504 PLAN MEETINGS, RESOLUTION MEETINGS, AND MEDIATIONS) IN PERSON, THROUGH SKYPE/ZOOM, AND VIA CONFERENCE CALLS TO SUPPORT FAMILIES IN ATTAINING EDUCATIONAL SERVICES FOR THEIR CHILDREN THROUGHOUT THE COUNTRY. SEVERAL SCHOOL SYSTEMS ALSO REQUESTED "TSC 101" IN AN EFFORT TO HELP THEM UNDERSTAND THE COMPLEXITIES OF TSC AND LEARNING ISSUES FOR CHILDREN WITH TSC. THE COMMUNITY PROGRAMS TEAM SUPPORTS A NETWORK OF 36 VOLUNTEER BRANCHES OF THE ORGANIZATION, CALLED COMMUNITY ALLIANCES,THAT PROVIDE SUPPORT AND COMMUNITY EDUCATION IN ALL 50 STATES. THE COMMUNITY PROGRAMS TEAM JOINED TOGETHER WITH THE SCIENCE DEPARTMENT TO PROVIDE FIVE (5) RESEARCH WEBINARS WITH 268 LIVE ATTENDEES AND 915 RECORDED VIEWS WITH 553 LANDING PAGE VIEWS AS OF DECEMBER 31, 2022. 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 2022, THE TOOL HAD 3,071 USERS. FIFTY-FIVE INDIVIDUALS OR FAMILIES WERE ALSO SUPPORTED FOR MEDICATION ACCESS ISSUES VIA OUR TSC NAVIGATOR PROGRAM DURING 2022, DOWN FROM 78 IN 2021, 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 2022, THE TSC ALLIANCE PRODUCED TWO ISSUES OF ITS NATIONAL MAGAZINE, PERSPECTIVE, WHICH IS MAILED TO APPROXIMATELY 18,000 CONSTITUENTS AS WELL AS POSTED ON THE WEBSITE. THE TSC ALLIANCE'S PODCAST SERIES, CALLED TSC NOW, PRODUCED 10 EPISODES WITH 2,248 TOTAL LISTENS. SIX ISSUES OF THE ELECTRONIC TSC MATTERS NEWSLETTER WERE DISTRIBUTED TO 17,173 RECIPIENTS. THE TSC ALLIANCE'S WEBSITE INCREASES AWARENESS AND PROVIDES EXTENSIVE EDUCATION THROUGH AN AVERAGE OF MORE THAN 23,000 UNIQUE VISITORS EACH MONTH. 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 10,500 MEMBERS FROM AROUND THE WORLD, WHILE ITS TWITTER ACCOUNT HAS 2,650 FOLLOWERS AND INSTAGRAM HAS 3,070 FOLLOWERS. TO INCREASE PUBLIC AWARENESS, THE TSC ALLIANCE PARTICIPATED IN THE TENTH ANNUAL TSC GLOBAL AWARENESS DAY ON MAY 15 AS WELL AS TSC AWARENESS MONTH THROUGHOUT MAY. THE TSC ALLIANCE ALSO HEAVILY PROMOTED THE THE SECOND ANNUAL SEIZURE ACTION PLAN AWARENESS WEEK (FEBRUARY 8-14) AND INFANTILE SPASMS AWARENESS WEEK (DECEMBER 1 TO 7). THESE AWARENESS CAMPAIGNS ALONG WITH THE ORGANIZATION'S VARIOUS NEWS RELEASES CULMINATED IN MORE THAN 2.7 BILLION CUMULATIVE IMPRESSIONS.
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 2022: BOARD MEMBER MUSTAFA SAHIN, PH.D., M.D., IS EMPLOYED AT BOSTON CHILDREN'S HOSPITAL, WHICH RECEIVED $57,409 IN GRANTS AND $9,985 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 $13,270 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 $8,085 IN FEES FOR SERVICES FOR PARTICIPATION IN THE TSC NATURAL HISTORY DATABASE. BOARD MEMBER AND CHAIR PETER CRINO, MD, PHD, IS CHAIR OF THE DEPARTMENT OF NEUROLOGY AT THE UNIVERSITY OF MD, WHICH RECIEVED $75,000 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 XI, LINE 9:	ROUNDING 2.
FORM 990, PART XII, LINE 2C:	THE ORGANIZATION HAS AN AUDIT COMMITTEE, AND STEVEN GOLDSTEIN IS THE AUDIT CHAIR. 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