NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC: Form 990, tax year 2016

View the entire original 990 at ProPublica ↗

Organization
NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC (EIN 95-3018799)
Tax period
2016-01-01 to 2016-12-31
Filed
2017-04-17
IRS object ID
201711079349300606
Schema version
2016v3.0
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 ReturnHeader

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Return2017-04-17T08:47:57-05:00ReturnTs
Tax Period End2016-12-31TaxPeriodEndDt

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CityBETHESDACityNm
State AbbreviationMDStateAbbreviationCd
ZIP208143423ZIPCd
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Return Type990ReturnTypeCd
Tax Period Begin2016-01-01TaxPeriodBeginDt

Filer Filer

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EIN953018799EIN

Business Name BusinessName

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Business Name Line1NATIONAL TUBEROUS SCLEROSIS ASSOCIATIONBusinessNameLine1Txt
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In Care Of% THE ORGANIZATIONInCareOfNm
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Business Officer BusinessOfficerGrp

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PersonKARI L ROSBECKPersonNm
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IP Address IPAddress

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I Pv4 Address66.195.210.98IPv4AddressTxt
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Federal Original Submission Id52746520171075000021FederalOriginalSubmissionId
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FieldValueIRS element (for citing)
Tax2016TaxYr
Build TS2021-01-29 14:40:06ZBuildTS

Form 990 IRS990

Doing Business As Name DoingBusinessAsName

FieldValueIRS element (for citing)
Business Name Line1TUBEROUS SCLEROSIS ALLIANCEBusinessNameLine1Txt
FieldValueIRS element (for citing)
Principal OfficerKARI L ROSBECKPrincipalOfficerNm

US Address USAddress

FieldValueIRS element (for citing)
Address Line1801 ROEDER ROAD STE 750AddressLine1Txt
CitySILVER SPRINGCityNm
State AbbreviationMDStateAbbreviationCd
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Gross Receipts$5,334,129GrossReceiptsAmt
Group Return For AffiliatesfalseGroupReturnForAffiliatesInd
Organization501c3Yes (X)Organization501c3Ind
Website AddressWWW.TSALLIANCE.ORGWebsiteAddressTxt
Type Of Organization CorpYes (X)TypeOfOrganizationCorpInd
Formation1975FormationYr
Legal Domicile StateCALegalDomicileStateCd
Activity Or MissionTHE TS ALLIANCE IS DEDICATED TO FINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THOSE AFFECTED.ActivityOrMissionDesc
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Total Employee17TotalEmployeeCnt
Total Volunteers1566TotalVolunteersCnt
Total Gross UBI$0TotalGrossUBIAmt
PY Contributions Grants$3,514,873PYContributionsGrantsAmt
CY Contributions Grants$4,517,826CYContributionsGrantsAmt
PY Program Service Revenue$478,813PYProgramServiceRevenueAmt
CY Program Service Revenue$629,254CYProgramServiceRevenueAmt
PY Investment Income$13,679PYInvestmentIncomeAmt
CY Investment Income$13,638CYInvestmentIncomeAmt
PY Other Revenue$1,071PYOtherRevenueAmt
CY Other Revenue$46,841CYOtherRevenueAmt
PY Total Revenue$4,008,436PYTotalRevenueAmt
CY Total Revenue$5,207,559CYTotalRevenueAmt
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PY Salaries Comp Emp Bnft Paid$1,544,461PYSalariesCompEmpBnftPaidAmt
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PY Total Prof Fndrsng Expns$0PYTotalProfFndrsngExpnsAmt
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CY Total Fundraising Expense$635,871CYTotalFundraisingExpenseAmt
PY Other Expenses$1,877,431PYOtherExpensesAmt
CY Other Expenses$2,302,337CYOtherExpensesAmt
PY Total Expenses$3,910,590PYTotalExpensesAmt
CY Total Expenses$4,892,437CYTotalExpensesAmt
PY Revenues Less Expenses$97,846PYRevenuesLessExpensesAmt
CY Revenues Less Expenses$315,122CYRevenuesLessExpensesAmt
Total Assets BOY$8,707,847TotalAssetsBOYAmt
Total Assets EOY$10,004,341TotalAssetsEOYAmt
Total Liabilities BOY$287,236TotalLiabilitiesBOYAmt
Total Liabilities EOY$738,137TotalLiabilitiesEOYAmt
Net Assets Or Fund Balances BOY$8,420,611NetAssetsOrFundBalancesBOYAmt
Net Assets Or Fund Balances EOY$9,266,204NetAssetsOrFundBalancesEOYAmt
Info In Schedule O Part IIIYes (X)InfoInScheduleOPartIIIInd
MissionTHE NATIONAL TUBEROUS SCLEROSIS ASSOCIATION, D/B/A TUBEROUS SCLEROSIS ALLIANCE, IS DEDICATED TO FINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THOSE AFFECTED.MissionDesc
Significant New Program SrvcfalseSignificantNewProgramSrvcInd
Significant ChangefalseSignificantChangeInd
Expense$2,469,977ExpenseAmt
Grant$887,095GrantAmt
Revenue$599,604RevenueAmt
DescResearch 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. The TS Alliance has funded more than $19.7 million in research on TSC since 1984. Directed by Steven L. Roberds, Ph.D., Chief Scientific Officer, the TS Alliance research grants program funds research focused on TSC proposed by researchers and aligned with the research priorities of the TS Alliance. Collaborations between basic and clinical researchers are encouraged and fostered, for example, by biennial International TSC Research Conferences. Through the TS Alliance research grants program, applications can be submitted for postdoctoral fellowships and research grants. Grants are reviewed in a three-step process: (1) all grant applications are reviewed by a committee comprised of scientists knowledgeable about the topic area for scientific merit and of 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 committees recommendations and the relevance of the applications to the TS Alliances funding priorities, and (3) the Board of Directors then reviews the recommendations of the Science and Medical Committee and makes final approval for funding. Implemented in 2006, the TSC Natural History Database captures clinical data to document the impact of the disease on a persons health over their lifetime. As of December 2016, 2,070 people with tuberous sclerosis complex were enrolled in the project from among 18 U.S.-based sites. The TS 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. In 2016, the TS Alliance invested $431,054 in the TSC Natural History Database and implemented sub-projects on renal angiomyolipomas and subepyndymal giant cell astrocytomas to address detailed questions about these life-threatening manifestations of TSC. A contract with Novartis executed in November 2012 was extended to provide TS Alliance with funding to enhance and grow the depth of data in the TSC Natural History Database through 2018. A total of 15 research awards were funded during 2016 for $887,095. The TS Alliance continued to support eight research grants awarded in previous years. Additionally, seven new research awards were funded beginning in 2016 to (1) Dr. Heng-Jia Liu (Brigham and Womens Hospital) for a postdoctoral fellowship to study T-cell dysfunction in TSC, (2) Dr. Peter Davis (Boston Childrens Hospital) to study brain network biomarkers of epilepsy in TSC, (3) Dr. Jonathan Lipton (Boston Childrens Hospital) to study the circadian clock as a capacitor for TSC-related phenotypes, (4) Dr. Mark Nellist (Erasmus Universitair Medisch Centrum Rotterdam) to functionally characterize TSC1 and TSC2 variants associated with TSC, (5) Dr. Carmen Priolo (Brigham and Womens Hospital) to study the lysophosphatidic acid pathway in TSC, (6) Dr. Peter Tsai (University of Texas Southwestern Medical Center) to study the impact of cerebellar-medial prefrontal cortical circuits in TSC, and (7) Dr. Darcy Krueger (Cincinnati Childrens Hospital Medical Center) to develop a clinical protocol to test the ability of mTOR inhibitors to prevent manifestiations of TSC. With the eight ongoing grants, the TS Alliance continued supporting (1) Dr. Brendan Manning (Harvard School of Public Health) to study the repurposing of inhibitors of purine synthesis for TSC treatment, (2) Dr. Polina Kosillo (University of California, Berkeley) for a postdoctoral fellowship to study the impact of TSC1 gene deletion on dopamine neurons, (3) Dr. Mustafa Sahin (Boston Children's Hospital) to study the "hedgehog" gene and ciliary signaling in TSC, (4) Dr. Sue Povey (University College London) to curate additional mutations in TSC1 and TSC2 genes and make them openly available to the public in a database that is highly utilized by genetic researchers in TSC, (5) Dr. Wei Shi (Childrens Hospital, Los Angeles) to develop and test a novel mouse model of LAM, (6) Dr. Gerta Hoxhaj (Harvard School of Public Health) to study the role of the protein TBC1D7 in cell migration in neurons and angiomyolipomas, (7) Dr. Michael Higley (Yale University) to learn how loss of TSC1 disrupts brain signaling circuits in mice, and (8) Dr. Mustafa Sahin (Boston Childrens Hospital) for supplemental support of imaging analysis in the Rare Diseases Clinical Research Network. The TSC Biosample Repository is a TS Alliance-directed project initiated in 2014 that will impact research over the next ten years or more. High-quality biosamples such as blood, DNA, and tissues linked to detailed clinical data are required for researchers to understand why TSC is so different from person to person. Such samples are currently unavailable, and the TS Alliances Science and Medical Committee identified this as a gap that can only be filled effectively with leadership of the TS Alliance, guided by a steering committee of clinicians and researchers. 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, Michigan, under control of the TS Alliance. The TSC Biosample Repository has collected 176 blood samples from voluntary participants enrolled in the TSC Natural History Database at Texas Scottish Rite Hospital, Nicklaus Childrens Hospital in Miami, and Minnesota Epilepsy Group, and from RDCRN participants at Boston Childrens Hospital, Cincinnati Childrens Hospital, the University of Alabama at Birmingham, University of Texas Health Science Center at Houston, and UCLA. The TS Alliance launched a new TSC Preclinical Consortium in 2015, which will enable prioritization of candidate treatments based on comparing head-to-head data using consistent animal models and rigorous testing procedures. The TS Alliance is ideally positioned to drive this collaboration - with input from academic, regulatory, and industry stakeholders - by maintaining constant focus on the needs of people with TSC. To drive this project, the TS Alliance contracted with Dr. Daniela Brunner, who has more than 20 years of experience validating in vivo experimental protocols and testing drugs in many animal models of developmental, psychiatric, and neurodegenerative diseases. The TS 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 TS Alliance to perform experiments under contract for commercial entities. This ensures that data generated by the Preclinical Consortium can be used to accelerate the development of new treatments by commercial entities as well as academic investigators. Three pharmaceutical companies joined the Preclinical Consortium in 2016. Additionally, four other companies have expressed serious interest. The consortium began running epilepsy experiments in August 2016 at a contract research organization, PsychoGenics, Inc. The TS Alliance continued to be a key part of the TSC Clinical Research Consortium although only a small amount of TS Alliance financial support was required because of the consortiums success in obtaining NATIONAL INSTITUTES OF HEALTH (NIH) funding. Now consisting of seven sites - Boston Childrens Hospital, Cincinnati Childrens Hospital, the University of Alabama at Birmingham, the University of Texas Health Science Center at Houston, UCLA, Stanford University, and Minnesota Epilepsy Group - the consortium has received $29 million in competitive grant funding from the NIH to support clinical studies in TSC. The Clinical Research Consortium is making history with the PREVeNT trial - Preventing epilepsy using vigabatrin in infants with tuberous sclerosis complex. PREVeNT is the first preventative trial for any form of epilepsy in the US and began enrolling participants in December 2016. The PREVeNT trial builds directly upon the Consortiums first clinical study from which interim results have been published (www.ncbi.nlm.nih.gov/pubmed/26498039) showing that all infants who developed abnormal activity on EEGs went on to develop seizures. This trial will determine whether treatment with vigabatrin prior to the onset of clinical seizures in TSC is beneficial to childrens developmental and neurologic outcomes. The TS Alliances Chief Scientific Officer is on the consortiums leadership team.Desc

Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp

FieldValueIRS element (for citing)
Expense$780,145ExpenseAmt
Grant$52,945GrantAmt
Revenue$10,250RevenueAmt
DescFamily 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. The Family Services Department provided support and resources to 3,307 individuals and families dealing with TSC throughout 2016. The Vice President of Outreach attended 65 school meetings (IEPs, Evaluation Team Meetings, 504 Plan Meetings, Resolution Meetings, and Mediations) in person, through SKYPE or Facetime, and via conference calls to support families in attaining educational services for their children throughout the country. In 2016, 24 Educational Liaison volunteers worked in 24 states to connect families to free educational advocacy trainings in collaboration with the states Parent Training and Information Centers. As a result, more than 2,344 free parent trainings/webinars on educational advocacy were offered to families dealing with educational issues for their children. In addition, the Educator Mentor Program supported 89 school systems in understanding the learning needs of children with TSC. Through a network of 37 volunteer branches of the organization, called Community Alliances, local education and support group meetings were held throughout the country. Through these Community Alliances, the TS Alliance hosted 76 educational meetings and gatherings. Among these 76 meetings was a 13-meeting Town Hall educational series. The series highlighted transition services offered by The Arc. These Town Hall meetings were hosted in TSC clinics and other venues across the United States with 160 people attending. One new Community Alliance, the TS Alliance of Kentucky/West Virginia, was added in 2016. The TS Alliance facilitated 13,540 peer-to-peer supports from Adult Regional Coordinators, Clinic Ambassadors and Dependent Adult Transition Resource Coordinators and through Community Alliance meetings. In 2016, the TS Alliance hosted three Regional TSC Conferences in partnership with The LAM Foundation held in Nashville, TN; Seattle, WA; and Cleveland, OH with 247 combined attendees. These conferences brought together individuals, parents, caregivers and members of the medical community to provide the most up-to-date information so parents and adults with TSC and LAM can make informed decisions when evaluating treatment options. These one-day symposiums offered educational outreach, information on the latest treatments in TSC and LAM, research updates, and support options. They featured the regions top experts and in a nurturing, supportive environment. Regional TSC Conferences provide much-needed forums for the growing number of people facing the daily challenges of TSC and LAM. To address unmet needs within the global TSC Community, the TS Global Alliance program was launched in 2014 with the TS Alliance of Israel. The program provides the opportunity for the TS 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 TS Alliance to facilitate local connections for individuals and families affected by TSC, and raise revenue and awareness while supporting the mission of the organization. In 2016, the TS Alliance signed global agreements with TS Canada ST, TS Alliance of Mexico and the TS Alliance ASEAN Foundation and issued grants of $52,945 to global alliance partners.Desc

Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp

FieldValueIRS element (for citing)
Expense$293,296ExpenseAmt
Revenue$1,500RevenueAmt
DescPublic Health Education heightens awareness of TSC throughout the general public to broaden the scope of support and understanding beyond TSC individuals and their families. During 2016, the TS Alliance produced three issues of its national magazine, Perspective, which is mailed to 15,000-plus constituents as well as posted on the website. The TS Alliances website increases awareness and provides extensive education through an average of more than 40,000 unique visitors each month; the site was completely redesigned in 2016 and launched December 14. The TS Alliance also relies heavily on social media to educate constituents and promote new resources and events. Its Facebook Group boasts more than 7,800 members, while its Twitter account has 1,600-plus followers. To increase public awareness, the TS Alliance once again participated in TSC Global Awareness Day on May 15 as well as TSC Awareness Month thoughout May; a TSC Global Awareness Day news release garnered 13.6 million impressions. The TS Alliance again heavily promoted Infantile Spasms Awareness Week with 16 partner organizations, December 1 to 7. This awareness campaign included social media, advertising to first line physicians and parents, and a media tour. Facebook advertising to reach misdiagnosed or those seeking a diagnosis reached 272,936 people. Advertising to first line physicians included an American College of Emergency Physicians newsletter ad with 37,249 subscribers and an American Academy of Pediatrics News ad reaching 64,805 readers. The satellite media tour with 33 aired interviews (21 TV/12 radio) reached a total audience of 6.1 million (309,712 broadcast 5,801,947 radio).Desc
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Form990 Part VII Section A Form990PartVIISectionAGrp (23 entries)

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DAVID FITZMAURICE
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TIM DILLS
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VP, COMMUNICATIONS STRATEGY45.00.0$100,926$0$3,670Yes (X)
FieldValueIRS element (for citing)
Total Reportable Comp From Org$589,344TotalReportableCompFromOrgAmt
Tot Reportable Comp Rltd Org$0TotReportableCompRltdOrgAmt
Total Other Compensation$90,144TotalOtherCompensationAmt
Indiv Rcvd Greater Than100 K4IndivRcvdGreaterThan100KCnt
Former Ofcr Employees ListedfalseFormerOfcrEmployeesListedInd
Total Comp Greater Than150 KYes (true)TotalCompGreaterThan150KInd
Compensation From Other SrcsfalseCompensationFromOtherSrcsInd

Contractor Compensation ContractorCompensationGrp

Contractor Name ContractorName

FieldValueIRS element (for citing)
PersonCAVAROCCHI RUSCIO DENNIS ASSOCIATPersonNm

Contractor Address ContractorAddress

US Address USAddress

FieldValueIRS element (for citing)
Address Line1600 MARYLAND AVE SW STE 835WAddressLine1Txt
CityWASHINGTONCityNm
State AbbreviationDCStateAbbreviationCd
ZIP20024ZIPCd
FieldValueIRS element (for citing)
ServicesGOVT RELATIONSServicesDesc
Compensation$103,884CompensationAmt
FieldValueIRS element (for citing)
Cntrct Rcvd Greater Than100 K1CntrctRcvdGreaterThan100KCnt
Info In Schedule O Part VIIIYes (X)InfoInScheduleOPartVIIIInd
Federated Campaigns$36,891FederatedCampaignsAmt
Membership Dues$9,045MembershipDuesAmt
Fundraising$1,284,683FundraisingAmt
All Other Contributions$3,187,207AllOtherContributionsAmt
Noncash Contributions$19,494NoncashContributionsAmt
Total Contributions$4,517,826TotalContributionsAmt

Program Service Revenue ProgramServiceRevenueGrp

FieldValueIRS element (for citing)
DescCONTRACT REVENUEDesc
Business900099BusinessCd
Total Revenue Column$629,254TotalRevenueColumnAmt
Related Or Exempt Func Income$629,254RelatedOrExemptFuncIncomeAmt
FieldValueIRS element (for citing)
Total Program Service Revenue$629,254TotalProgramServiceRevenueAmt

Investment Income InvestmentIncomeGrp

FieldValueIRS element (for citing)
Total Revenue Column$14,763TotalRevenueColumnAmt
Exclusion$14,763ExclusionAmt

Incm From Invest Bond Proceeds IncmFromInvestBondProceedsGrp

FieldValueIRS element (for citing)
Total Revenue Column$0TotalRevenueColumnAmt

Royalties Revenue RoyaltiesRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$668TotalRevenueColumnAmt
Exclusion$668ExclusionAmt

Rental Income Or Loss RentalIncomeOrLossGrp

FieldValueIRS element (for citing)
Real$0RealAmt
Personal$0PersonalAmt

Net Rental Income Or Loss NetRentalIncomeOrLossGrp

FieldValueIRS element (for citing)
Total Revenue Column$0TotalRevenueColumnAmt

Gross Amount Sales Assets GrossAmountSalesAssetsGrp

FieldValueIRS element (for citing)
Securities$20,269SecuritiesAmt

Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp

FieldValueIRS element (for citing)
Securities$19,494SecuritiesAmt
Other$1,900OtherAmt

Gain Or Loss GainOrLossGrp

FieldValueIRS element (for citing)
Securities$775SecuritiesAmt
Other-$1,900OtherAmt

Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp

FieldValueIRS element (for citing)
Total Revenue Column-$1,125TotalRevenueColumnAmt
Exclusion-$1,125ExclusionAmt
FieldValueIRS element (for citing)
Fundraising Gross Income$149,666FundraisingGrossIncomeAmt
Contri Rpt Fundraising Event$1,284,683ContriRptFundraisingEventAmt
Fundraising Direct Expenses$105,176FundraisingDirectExpensesAmt

Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp

FieldValueIRS element (for citing)
Total Revenue Column$44,490TotalRevenueColumnAmt
Exclusion$44,490ExclusionAmt

Net Income From Gaming NetIncomeFromGamingGrp

FieldValueIRS element (for citing)
Total Revenue Column$0TotalRevenueColumnAmt

Net Income Or Loss NetIncomeOrLossGrp

FieldValueIRS element (for citing)
Total Revenue Column$0TotalRevenueColumnAmt

Other Revenue Misc OtherRevenueMiscGrp

FieldValueIRS element (for citing)
DescMISCELLANEOUSDesc
Business900099BusinessCd
Total Revenue Column$1,683TotalRevenueColumnAmt
Exclusion$1,683ExclusionAmt
FieldValueIRS element (for citing)
Other Revenue Total$1,683OtherRevenueTotalAmt

Total Revenue TotalRevenueGrp

FieldValueIRS element (for citing)
Total Revenue Column$5,207,559TotalRevenueColumnAmt
Related Or Exempt Func Income$629,254RelatedOrExemptFuncIncomeAmt
Exclusion$60,479ExclusionAmt

Grants To Domestic Orgs GrantsToDomesticOrgsGrp

FieldValueIRS element (for citing)
Total$748,650TotalAmt
Program Services$748,650ProgramServicesAmt

Grants To Domestic Individuals GrantsToDomesticIndividualsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Foreign Grants ForeignGrantsGrp

FieldValueIRS element (for citing)
Total$191,390TotalAmt
Program Services$191,390ProgramServicesAmt

Benefits To Members BenefitsToMembersGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp

FieldValueIRS element (for citing)
Total$580,223TotalAmt
Program Services$315,695ProgramServicesAmt
Management And General$201,956ManagementAndGeneralAmt
Fundraising$62,572FundraisingAmt

Comp Disqual Persons CompDisqualPersonsGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Other Salaries And Wages OtherSalariesAndWagesGrp

FieldValueIRS element (for citing)
Total$863,353TotalAmt
Program Services$490,279ProgramServicesAmt
Management And General$125,398ManagementAndGeneralAmt
Fundraising$247,676FundraisingAmt

Pension Plan Contributions PensionPlanContributionsGrp

FieldValueIRS element (for citing)
Total$27,060TotalAmt
Program Services$16,808ProgramServicesAmt
Management And General$2,984ManagementAndGeneralAmt
Fundraising$7,268FundraisingAmt

Other Employee Benefits OtherEmployeeBenefitsGrp

FieldValueIRS element (for citing)
Total$82,706TotalAmt
Program Services$53,411ProgramServicesAmt
Management And General$515ManagementAndGeneralAmt
Fundraising$28,780FundraisingAmt

Payroll Taxes PayrollTaxesGrp

FieldValueIRS element (for citing)
Total$96,718TotalAmt
Program Services$55,027ProgramServicesAmt
Management And General$19,893ManagementAndGeneralAmt
Fundraising$21,798FundraisingAmt

Fees For Services Management FeesForServicesManagementGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Services Legal FeesForServicesLegalGrp

FieldValueIRS element (for citing)
Total$51,675TotalAmt
Program Services$33,241ProgramServicesAmt
Management And General$15,684ManagementAndGeneralAmt
Fundraising$2,750FundraisingAmt

Fees For Services Accounting FeesForServicesAccountingGrp

FieldValueIRS element (for citing)
Total$27,915TotalAmt
Management And General$27,915ManagementAndGeneralAmt

Fees For Services Lobbying FeesForServicesLobbyingGrp

FieldValueIRS element (for citing)
Total$104,376TotalAmt
Program Services$104,376ProgramServicesAmt

Fees For Services Prof Fundraising FeesForServicesProfFundraising

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Srvc Invst Mgmnt Fees FeesForSrvcInvstMgmntFeesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Fees For Services Other FeesForServicesOtherGrp

FieldValueIRS element (for citing)
Total$112,001TotalAmt
Program Services$71,314ProgramServicesAmt
Management And General$7,391ManagementAndGeneralAmt
Fundraising$33,296FundraisingAmt

Advertising AdvertisingGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Office Expenses OfficeExpensesGrp

FieldValueIRS element (for citing)
Total$318,858TotalAmt
Program Services$136,411ProgramServicesAmt
Management And General$77,990ManagementAndGeneralAmt
Fundraising$104,457FundraisingAmt

Information Technology InformationTechnologyGrp

FieldValueIRS element (for citing)
Total$118,628TotalAmt
Program Services$25,916ProgramServicesAmt
Management And General$92,712ManagementAndGeneralAmt

Royalties RoyaltiesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Occupancy OccupancyGrp

FieldValueIRS element (for citing)
Total$81,757TotalAmt
Program Services$270ProgramServicesAmt
Management And General$81,217ManagementAndGeneralAmt
Fundraising$270FundraisingAmt

Travel TravelGrp

FieldValueIRS element (for citing)
Total$218,353TotalAmt
Program Services$169,816ProgramServicesAmt
Management And General$2,496ManagementAndGeneralAmt
Fundraising$46,041FundraisingAmt

Pymt Travel Entrtnmnt Pub Ofcl PymtTravelEntrtnmntPubOfclGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Conferences Meetings ConferencesMeetingsGrp

FieldValueIRS element (for citing)
Total$135,409TotalAmt
Program Services$105,535ProgramServicesAmt
Management And General$27,503ManagementAndGeneralAmt
Fundraising$2,371FundraisingAmt

Interest InterestGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Payments To Affiliates PaymentsToAffiliatesGrp

FieldValueIRS element (for citing)
Total$0TotalAmt

Depreciation Depletion DepreciationDepletionGrp

FieldValueIRS element (for citing)
Total$50,471TotalAmt
Program Services$3,147ProgramServicesAmt
Management And General$47,324ManagementAndGeneralAmt

Insurance InsuranceGrp

FieldValueIRS element (for citing)
Total$7,348TotalAmt
Management And General$7,348ManagementAndGeneralAmt

Other Expenses OtherExpensesGrp (4 entries)

DescDescTotalTotalAmtProgram ServicesProgramServicesAmtManagement And GeneralManagementAndGeneralAmtFundraisingFundraisingAmt
PRECLINICAL CONSORTIUM$492,760$492,760
NATURAL HISTORY DATABASE$431,054$431,054
BIOSAMPLE REPOSITORY$82,925$82,925
OVERHEAD ALLOCATION$188,625-$262,909$74,284

All Other Expenses AllOtherExpensesGrp

FieldValueIRS element (for citing)
Total$68,807TotalAmt
Program Services$38,679ProgramServicesAmt
Management And General$25,820ManagementAndGeneralAmt
Fundraising$4,308FundraisingAmt

Total Functional Expenses TotalFunctionalExpensesGrp

FieldValueIRS element (for citing)
Total$4,892,437TotalAmt
Program Services$3,755,329ProgramServicesAmt
Management And General$501,237ManagementAndGeneralAmt
Fundraising$635,871FundraisingAmt
FieldValueIRS element (for citing)
Joint CostsYes (X)JointCostsInd

Total Joint Costs TotalJointCostsGrp

FieldValueIRS element (for citing)
Total$104,180TotalAmt
Program Services$52,090ProgramServicesAmt
Fundraising$52,090FundraisingAmt

Cash Non Interest Bearing CashNonInterestBearingGrp

FieldValueIRS element (for citing)
BOY$2,873,836BOYAmt
EOY$1,840,325EOYAmt

Savings And Temp Cash Invst SavingsAndTempCashInvstGrp

FieldValueIRS element (for citing)
BOY$499,163BOYAmt
EOY$779,808EOYAmt

Pledges And Grants Receivable PledgesAndGrantsReceivableGrp

FieldValueIRS element (for citing)
BOY$316,197BOYAmt
EOY$1,480,988EOYAmt

Accounts Receivable AccountsReceivableGrp

FieldValueIRS element (for citing)
BOY$2,450BOYAmt
EOY$262,025EOYAmt

Receivables From Officers Etc ReceivablesFromOfficersEtcGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$0EOYAmt

Rcvbl From Disqualified Prsn RcvblFromDisqualifiedPrsnGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$0EOYAmt

Oth Notes Loans Receivable Net OthNotesLoansReceivableNetGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$0EOYAmt

Inventories For Sale Or Use InventoriesForSaleOrUseGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$0EOYAmt

Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp

FieldValueIRS element (for citing)
BOY$107,800BOYAmt
EOY$182,942EOYAmt
FieldValueIRS element (for citing)
Land Bldg Equip Cost Or Other Bss$360,151LandBldgEquipCostOrOtherBssAmt
Land Bldg Equip Accum Deprec$169,819LandBldgEquipAccumDeprecAmt

Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp

FieldValueIRS element (for citing)
BOY$146,437BOYAmt
EOY$190,332EOYAmt

Investments Pub Traded Sec InvestmentsPubTradedSecGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$0EOYAmt

Investments Other Securities InvestmentsOtherSecuritiesGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$0EOYAmt

Investments Program Related InvestmentsProgramRelatedGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$0EOYAmt

Intangible Assets IntangibleAssetsGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$0EOYAmt

Other Assets Total OtherAssetsTotalGrp

FieldValueIRS element (for citing)
BOY$4,761,964BOYAmt
EOY$5,267,921EOYAmt

Total Assets TotalAssetsGrp

FieldValueIRS element (for citing)
BOY$8,707,847BOYAmt
EOY$10,004,341EOYAmt

Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp

FieldValueIRS element (for citing)
BOY$270,808BOYAmt
EOY$523,259EOYAmt

Grants Payable GrantsPayableGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$0EOYAmt

Deferred Revenue DeferredRevenueGrp

FieldValueIRS element (for citing)
BOY$16,428BOYAmt
EOY$131,976EOYAmt

Tax Exempt Bond Liabilities TaxExemptBondLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$0EOYAmt

Escrow Account Liability EscrowAccountLiabilityGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$0EOYAmt

Loans From Officers Directors LoansFromOfficersDirectorsGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$0EOYAmt

Mortg Notes Pybl Scrd Invst Prop MortgNotesPyblScrdInvstPropGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$0EOYAmt

Unsecured Notes Loans Payable UnsecuredNotesLoansPayableGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$0EOYAmt

Other Liabilities OtherLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$0BOYAmt
EOY$82,902EOYAmt

Total Liabilities TotalLiabilitiesGrp

FieldValueIRS element (for citing)
BOY$287,236BOYAmt
EOY$738,137EOYAmt
FieldValueIRS element (for citing)
Organization Follows SFAS117Yes (X)OrganizationFollowsSFAS117Ind

Unrestricted Net Assets UnrestrictedNetAssetsGrp

FieldValueIRS element (for citing)
BOY$5,643,768BOYAmt
EOY$5,303,111EOYAmt

Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp

FieldValueIRS element (for citing)
BOY$1,897,399BOYAmt
EOY$3,083,649EOYAmt

Permanently Rstr Net Assets PermanentlyRstrNetAssetsGrp

FieldValueIRS element (for citing)
BOY$879,444BOYAmt
EOY$879,444EOYAmt

Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$8,420,611BOYAmt
EOY$9,266,204EOYAmt

Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp

FieldValueIRS element (for citing)
BOY$8,707,847BOYAmt
EOY$10,004,341EOYAmt
FieldValueIRS element (for citing)
Info In Schedule O Part XIYes (X)InfoInScheduleOPartXIInd
Reconcilation Revenue Expnss$315,122ReconcilationRevenueExpnssAmt
Other Changes In Net Assets$530,471OtherChangesInNetAssetsAmt
Info In Schedule O Part XIIYes (X)InfoInScheduleOPartXIIInd
Method Of Accounting AccrualYes (X)MethodOfAccountingAccrualInd
Accountant Compile Or ReviewfalseAccountantCompileOrReviewInd
FS AuditedYes (true)FSAuditedInd

FS Audited Basis FSAuditedBasisGrp

FieldValueIRS element (for citing)
Consolidated Basis Fincl StmtYes (X)ConsolidatedBasisFinclStmtInd
FieldValueIRS element (for citing)
Audit CommitteeYes (true)AuditCommitteeInd
Federal Grant Audit RequiredfalseFederalGrantAuditRequiredInd

Schedule A IRS990ScheduleA

FieldValueIRS element (for citing)
Public Organization170Yes (X)PublicOrganization170Ind

Gifts Grants Contri Rcvd170 GiftsGrantsContriRcvd170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$3,199,643CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$3,239,048CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$3,124,386CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$3,514,873CurrentTaxYearMinus1YearAmt
Current Tax Year$4,517,826CurrentTaxYearAmt
Total$17,595,776TotalAmt

Tax Rev Levied Orgnztnl Bnft170 TaxRevLeviedOrgnztnlBnft170Grp

FieldValueIRS element (for citing)
Total$0TotalAmt

Govt Furn Srvc Fclts Vl170 GovtFurnSrvcFcltsVl170Grp

FieldValueIRS element (for citing)
Total$0TotalAmt

Total Calendar Year170 TotalCalendarYear170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$3,199,643CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$3,239,048CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$3,124,386CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$3,514,873CurrentTaxYearMinus1YearAmt
Current Tax Year$4,517,826CurrentTaxYearAmt
Total$17,595,776TotalAmt
FieldValueIRS element (for citing)
Substantial Contributors Tot$3,168,321SubstantialContributorsTotAmt
Public Support Total170$14,427,455PublicSupportTotal170Amt

Gross Investment Income170 GrossInvestmentIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$9,794CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$13,335CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$13,455CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$16,038CurrentTaxYearMinus1YearAmt
Current Tax Year$15,431CurrentTaxYearAmt
Total$68,053TotalAmt

Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp

FieldValueIRS element (for citing)
Current Tax Year$44,490CurrentTaxYearAmt
Total$44,490TotalAmt

Other Income170 OtherIncome170Grp

FieldValueIRS element (for citing)
Current Tax Year Minus4 Years$23,048CurrentTaxYearMinus4YearsAmt
Current Tax Year Minus3 Years$5,984CurrentTaxYearMinus3YearsAmt
Current Tax Year Minus2 Years$9,351CurrentTaxYearMinus2YearsAmt
Current Tax Year Minus1 Year$1,401CurrentTaxYearMinus1YearAmt
Current Tax Year$1,683CurrentTaxYearAmt
Total$41,467TotalAmt
FieldValueIRS element (for citing)
Total Support$17,749,786TotalSupportAmt
Gross Receipts Rltd Activities$3,531,539GrossReceiptsRltdActivitiesAmt
Public Support CY1700.81282PublicSupportCY170Pct
Public Support PY1700.85040PublicSupportPY170Pct
Thirty Thr Pct Suprt Tests CY170Yes (X)ThirtyThrPctSuprtTestsCY170Ind

Schedule B IRS990ScheduleB

Contributor Information ContributorInformationGrp

FieldValueIRS element (for citing)
ContributorRESTRICTEDContributorNum

Contributor Business Name ContributorBusinessName

FieldValueIRS element (for citing)
Business Name Line1RESTRICTEDBusinessNameLine1

Contributor US Address ContributorUSAddress

FieldValueIRS element (for citing)
Address Line1RESTRICTEDAddressLine1
Address Line2RESTRICTEDAddressLine2
CityRESTRICTEDCity
StateRESTRICTEDState
ZIP CodeRESTRICTEDZIPCode
FieldValueIRS element (for citing)
Total ContributionsRESTRICTEDTotalContributionsAmt

Schedule C IRS990ScheduleC

Total Grassroots Lobbying TotalGrassrootsLobbyingGrp

FieldValueIRS element (for citing)
Filing Organizations Total$986FilingOrganizationsTotalAmt

Total Direct Lobbying TotalDirectLobbyingGrp

FieldValueIRS element (for citing)
Filing Organizations Total$145,927FilingOrganizationsTotalAmt

Total Lobbying Expend TotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$146,913FilingOrganizationsTotalAmt

Other Exempt Purpose Expend OtherExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$4,745,524FilingOrganizationsTotalAmt

Total Exempt Purpose Expend TotalExemptPurposeExpendGrp

FieldValueIRS element (for citing)
Filing Organizations Total$4,892,437FilingOrganizationsTotalAmt

Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Filing Organizations Total$394,622FilingOrganizationsTotalAmt

Grassroots Nontaxable GrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Filing Organizations Total$98,656FilingOrganizationsTotalAmt
FieldValueIRS element (for citing)
Tot Lbbyng Grassroot Mns Non TxTotLbbyngGrassrootMnsNonTxGrp
Tot Lbby Expend Mns Lbbyng Non TxTotLbbyExpendMnsLbbyngNonTxGrp

Avg Lobbying Nontaxable Amount AvgLobbyingNontaxableAmountGrp

FieldValueIRS element (for citing)
Current Year Minus3$354,161CurrentYearMinus3Amt
Current Year Minus2$362,797CurrentYearMinus2Amt
Current Year Minus1$364,719CurrentYearMinus1Amt
Current Year$394,622CurrentYearAmt
Total$1,476,299TotalAmt
FieldValueIRS element (for citing)
Lobbying Ceiling$2,214,449LobbyingCeilingAmt

Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus3$142,520CurrentYearMinus3Amt
Current Year Minus2$178,975CurrentYearMinus2Amt
Current Year Minus1$126,441CurrentYearMinus1Amt
Current Year$145,927CurrentYearAmt
Total$593,863TotalAmt

Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp

FieldValueIRS element (for citing)
Current Year Minus3$88,540CurrentYearMinus3Amt
Current Year Minus2$90,699CurrentYearMinus2Amt
Current Year Minus1$91,180CurrentYearMinus1Amt
Current Year$98,656CurrentYearAmt
Total$369,075TotalAmt
FieldValueIRS element (for citing)
Grassroots Ceiling$553,613GrassrootsCeilingAmt

Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp

FieldValueIRS element (for citing)
Current Year Minus3$919CurrentYearMinus3Amt
Current Year Minus2$905CurrentYearMinus2Amt
Current Year Minus1$5,047CurrentYearMinus1Amt
Current Year$986CurrentYearAmt
Total$7,857TotalAmt

Schedule D IRS990ScheduleD

FieldValueIRS element (for citing)
Art Public Exhibition AmountsArtPublicExhibitionAmountsGrp
Held Works ArtHeldWorksArtGrp

CY Endwmt Fund CYEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$4,763,517BeginningYearBalanceAmt
Contributions$58,749ContributionsAmt
Investment Earnings Or Losses$525,868InvestmentEarningsOrLossesAmt
Administrative Expenses$54,145AdministrativeExpensesAmt
End Year Balance$5,293,989EndYearBalanceAmt

CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$5,061,299BeginningYearBalanceAmt
Contributions$29,940ContributionsAmt
Investment Earnings Or Losses$93,294InvestmentEarningsOrLossesAmt
Other Expenditures$202,000OtherExpendituresAmt
Administrative Expenses$32,428AdministrativeExpensesAmt
End Year Balance$4,950,105EndYearBalanceAmt

CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$4,994,766BeginningYearBalanceAmt
Contributions$47,153ContributionsAmt
Investment Earnings Or Losses$179,553InvestmentEarningsOrLossesAmt
Other Expenditures$97,500OtherExpendituresAmt
Administrative Expenses$62,673AdministrativeExpensesAmt
End Year Balance$5,061,299EndYearBalanceAmt

CY Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$4,457,365BeginningYearBalanceAmt
Contributions$42,690ContributionsAmt
Investment Earnings Or Losses$718,381InvestmentEarningsOrLossesAmt
Other Expenditures$197,200OtherExpendituresAmt
Administrative Expenses$26,470AdministrativeExpensesAmt
End Year Balance$4,994,766EndYearBalanceAmt

CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp

FieldValueIRS element (for citing)
Beginning Year Balance$4,221,150BeginningYearBalanceAmt
Contributions$43,996ContributionsAmt
Investment Earnings Or Losses$420,983InvestmentEarningsOrLossesAmt
Other Expenditures$202,000OtherExpendituresAmt
Administrative Expenses$26,764AdministrativeExpensesAmt
End Year Balance$4,457,365EndYearBalanceAmt
FieldValueIRS element (for citing)
Board Designated Balance EOY0.81390BoardDesignatedBalanceEOYPct
Prmnnt Endowment Balance EOY0.16610PrmnntEndowmentBalanceEOYPct
Term Endowment Balance EOY0.02000TermEndowmentBalanceEOYPct
Endowments Held Unrelated OrgfalseEndowmentsHeldUnrelatedOrgInd
Endowments Held Related OrgYes (true)EndowmentsHeldRelatedOrgInd
Related Org List Sch RYes (true)RelatedOrgListSchRInd
LandLandGrp
BuildingsBuildingsGrp

Leasehold Improvements LeaseholdImprovementsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$156,545OtherCostOrOtherBasisAmt
Depreciation$84,224DepreciationAmt
Book Value$72,321BookValueAmt

Equipment EquipmentGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$19,886OtherCostOrOtherBasisAmt
Depreciation$8,450DepreciationAmt
Book Value$11,436BookValueAmt

Other Land Buildings OtherLandBuildingsGrp

FieldValueIRS element (for citing)
Other Cost Or Other Basis$183,720OtherCostOrOtherBasisAmt
Depreciation$77,145DepreciationAmt
Book Value$106,575BookValueAmt
FieldValueIRS element (for citing)
Total Book Value Land Buildings$190,332TotalBookValueLandBuildingsAmt

Other Assets Org OtherAssetsOrgGrp (2 entries)

DescDescBook ValueBookValueAmt
INTEREST IN NET ASSETS OF AFFI$5,293,962
DUE FROM AFFILIATE-$26,041
FieldValueIRS element (for citing)
Total Book Value Other Assets$5,267,921TotalBookValueOtherAssetsAmt
Federal Income Tax Liability$0FederalIncomeTaxLiabilityAmt

Other Liabilities Org OtherLiabilitiesOrgGrp

FieldValueIRS element (for citing)
DescDEFERRED RENT & LEASE INCENTIVEDesc
Amt$82,902Amt
FieldValueIRS element (for citing)
Total Liability$82,902TotalLiabilityAmt
Footnote TextYes (X)FootnoteTextInd
Total Rev Etc Audited Fincl Stmt$5,794,361TotalRevEtcAuditedFinclStmtAmt
Net Unrealized Gains Invst$161,688NetUnrealizedGainsInvstAmt
Donated Services And Use Fclts$26,947DonatedServicesAndUseFcltsAmt
Other Revenue$398,167OtherRevenueAmt
Revenue Not Reported$586,802RevenueNotReportedAmt
Revenue Subtotal$5,207,559RevenueSubtotalAmt
Total Revenue Per Form990$5,207,559TotalRevenuePerForm990Amt
Tot Expns Etc Audited Fincl Stmt$4,948,768TotExpnsEtcAuditedFinclStmtAmt
Donated Services Use Fclts$26,947DonatedServicesUseFcltsAmt
Other Expenses Included$29,384OtherExpensesIncludedAmt
Expenses Not Reported$56,331ExpensesNotReportedAmt
Expenses Subtotal$4,892,437ExpensesSubtotalAmt
Total Expenses Per Form990$4,892,437TotalExpensesPerForm990Amt

Supplemental Information Detail SupplementalInformationDetail (4 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
PART V, LINE 4:THE ALLIANCE'S ENDOWMENTS CONSIST OF TWO FUNDS ESTABLISHED FOR DIFFERENT PURPOSES. THE ALLIANCE'S ENDOWMENT INCLUDE ONE TRADITIONAL DONOR-RESTRICTED ENDOWMENT FUNDS AND ONE BOARD-DESIGNATED ENDOWMENT FUND. THE BOARD-DESIGNATED ENDOWMENT FUND SOLELY CONSISTS OF THE ENDOWMENT FUND'S UNRESTRICTED NET ASSET BALANCE.
PART X, LINE 2:Accounting principles generally accepted in the United States of America require management to evaluate income tax positions taken and accrue an income tax liability if the organization has taken an uncertain position that more likely than not would not be sustained upon examination by the Internal Revenue Service. Management has evaluated the income tax positions taken and concluded that as of December 31, 2016 there are no uncertain positions taken or expected to be taken that would require accrual of a liability in the consolidated financial statements. The Alliance is subject to routine audits by taxing jurisdictions; however, there are currently no audits in progress for any tax periods. As of December 31, 2016 the statute of limitations for tax years 2013 through 2015 remains open with the U.S. federal jurisdiction or the various states and local jurisdictions in which the Alliance files tax returns.
PART XI, LINE 2D - OTHER ADJUSTMENTS:$398,167 REVENUES FROM RELATED ORGANIZATION
PART XII, LINE 2D - OTHER ADJUSTMENTS:$29,384 EXPENSES FROM RELATED ORGANIZATION

Schedule F IRS990ScheduleF

FieldValueIRS element (for citing)
Grant Records MaintainedYes (true)GrantRecordsMaintainedInd

Account Activities Outside US AccountActivitiesOutsideUSGrp (3 entries)

RegionRegionTxtType Of Activities ConductedTypeOfActivitiesConductedTxtRegion Total ExpendituresRegionTotalExpendituresAmt
Europe (Including Iceland and Greenland)Grantmaking$138,445
North AmericaGrantmaking$25,000
East Asia and the PacificGrantmaking$27,945
FieldValueIRS element (for citing)
Subtotal Spent$191,390SubtotalSpentAmt
Total Spent$191,390TotalSpentAmt

Grants To Org Outside US GrantsToOrgOutsideUSGrp (4 entries)

RegionRegionTxtPurpose Of GrantPurposeOfGrantTxtCash GrantCashGrantAmtManner Of Cash DisbursementMannerOfCashDisbursementTxtValuation Method UsedValuationMethodUsedDesc
Europe (Including Iceland and Greenland)RESEARCH$63,445CHECK & WIRECASH
Europe (Including Iceland and Greenland)RESEARCH$75,000WIRECASH
North AmericaRESEARCH$25,000WIRECASH
East Asia and the PacificRESEARCH$24,000WIRECASH
FieldValueIRS element (for citing)
Total501c3 Org2Total501c3OrgCnt
Total Other Org3TotalOtherOrgCnt
Transfer To Foreign CorpfalseTransferToForeignCorpInd
Interest In Foreign TrustfalseInterestInForeignTrustInd
Foreign Corp OwnershipfalseForeignCorpOwnershipInd
Passive Foreign Investmest CofalsePassiveForeignInvestmestCoInd
Foreign PartnershipfalseForeignPartnershipInd
Boycott CountriesfalseBoycottCountriesInd

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationGRANTEE 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 IF THE GRANTEE ORGANIZATION WILL CONTINUE TO RECEIVE FUNDING. A FINAL WRITTEN AND FINANCIAL REPORT IS REQUIRED OF ALL GRANTEES.ExplanationTxt

Schedule G IRS990ScheduleG

Fundraising Event Information FundraisingEventInformationGrp

FieldValueIRS element (for citing)
Event1walksEvent1Nm
Gross Receipts Event1$1,052,858GrossReceiptsEvent1Amt
Charitable Contri Event1$937,858CharitableContriEvent1Amt
Gross Revenue Event1$115,000GrossRevenueEvent1Amt
Non Cash Prizes Event1$25,309NonCashPrizesEvent1Amt
Rent Facility Costs Event1$20,104RentFacilityCostsEvent1Amt
Food And Beverage Event1$4,664FoodAndBeverageEvent1Amt
Entertainment Event1$4,709EntertainmentEvent1Amt
Event2comedy for cureEvent2Nm
Gross Receipts Event2$199,449GrossReceiptsEvent2Amt
Charitable Contri Event2$174,127CharitableContriEvent2Amt
Gross Revenue Event2$25,322GrossRevenueEvent2Amt
Non Cash Prizes Event2$196NonCashPrizesEvent2Amt
Rent Facility Costs Event2$9,885RentFacilityCostsEvent2Amt
Food And Beverage Event2$25,449FoodAndBeverageEvent2Amt
Entertainment Event2$1,186EntertainmentEvent2Amt
Other Events Total9OtherEventsTotalCnt
Gross Receipts Other Events$182,042GrossReceiptsOtherEventsAmt
Charitable Contri Other Events$172,698CharitableContriOtherEventsAmt
Gross Revenue Other Events$9,344GrossRevenueOtherEventsAmt
Non Cash Prizes Other Events$1,168NonCashPrizesOtherEventsAmt
Rent Fclty Costs Other Events$200RentFcltyCostsOtherEventsAmt
Food And Beverage Other Events$11,574FoodAndBeverageOtherEventsAmt
Entertainment Other Events$732EntertainmentOtherEventsAmt
Gross Receipts Total$1,434,349GrossReceiptsTotalAmt
Charitable Contributions Tot$1,284,683CharitableContributionsTotAmt
Gross Revenue Total Events$149,666GrossRevenueTotalEventsAmt
Non Cash Prizes Total Events$26,673NonCashPrizesTotalEventsAmt
Rent Fclty Costs Total Events$30,189RentFcltyCostsTotalEventsAmt
Food And Beverage Total Events$41,687FoodAndBeverageTotalEventsAmt
Entertainment Total Events$6,627EntertainmentTotalEventsAmt
Direct Expense Summary Events$105,176DirectExpenseSummaryEventsAmt
Net Income Summary$44,490NetIncomeSummaryAmt

Schedule I IRS990ScheduleI

FieldValueIRS element (for citing)
Grant Records MaintainedYes (true)GrantRecordsMaintainedInd

Recipient Table RecipientTable (10 entries)

Address Line1USAddress/AddressLine1TxtCityUSAddress/CityNmState AbbreviationUSAddress/StateAbbreviationCdZIPUSAddress/ZIPCdRecipient EINRecipientEINIRC SectionIRCSectionDescCash GrantCashGrantAmtPurpose Of GrantPurposeOfGrantTxt
BRIGHAM & WOMEN'S HOSPITAL
75 ST FRANCIS STREETBOSTONMA02115042312909501(C)(3)$68,750RESEARCH GRANTS
HARVARD TH CHAN SCHOOL OF PUBLIC HEALTH
PO BOX 415649BOSTONMA02241042103580501(C)(3)$100,000RESEARCH GRANT
UC BERKELEY
2150 SHATTUCK AVE 300BERKELEYCA94704946002123501(C)(3)$75,000RESEARCH GRANT
UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER
5323 HARRY HINES BLVDDALLASTX75287756002868501(C)(3)$18,750RESEARCH GRANT
BOSTON CHILDREN'S HOSPITAL
RSRCH FIN PO BOX 414413BOSTONMA02241042774441501(C)(3)$225,000RESEARCH GRANTS
AMERICAN EPILEPSY SOCIETY
135 SOUTH LASALLE STCHICAGOIL60603046112600501(C)(3)$40,000RESEARCH GRANT
CHILDREN'S HOSPITAL LOS ANGELES
4650 SUNSET BLVDLOS ANGELESCA90027959121916501(C)(3)$56,250RESEARCH GRANT
CHILDREN'S HOSPITAL MEDICAL CENTER
3333 BURNET AVENUECINCINNATIOH45229310833936501(C)(3)$50,000RESEARCH GRANT
PRESIDENT & FELLOWS OF HARVARD COLLEGE
PO BOX 415649BOSTONMA042103580042103580501(C)(3)$56,250RESEARCH GRANT
YALE UNIVERSITY
PO BOX 1873NEW HAVENCT06508060646973501(C)(3)$56,250RESEARCH GRANT
FieldValueIRS element (for citing)
Total501c3 Org9Total501c3OrgCnt

Supplemental Information Detail SupplementalInformationDetail

FieldValueIRS element (for citing)
Form And Line ReferencePART I, LINE 2:FormAndLineReferenceDesc
ExplanationTHE TS ALLIANCE HAS FUNDED MORE THAN $19.7 MILLION IN RESEARCH ON TSC SINCE 1984. DIRECTED BY STEVEN L. ROBERDS, PH.D, CHIEF SCIENTIFIC OFFICER, THE TS ALLIANCE RESEARCH GRANTS PROGRAM FUNDS RESEARCH FOCUSED ON TSC WITH PRIORITIES SET BY THE RESEARCHERS TOGETHER WITH THE TS ALLIANCE. COLLABORATIONS BETWEEN BASIC AND CLINICAL RESEARCHERS ARE ENCOURAGED AND FOSTERED, AND THE TS ALLIANCE IS WORKING TO INCREASE FUNDING FOR RESEARCH ON TSC. THROUGH THE TS ALLIANCE RESEARCH GRANTS PROGRAM, APPLICATIONS CAN BE SUBMITTED FOR: - POSTDOCTORAL FELLOWSHIPS - TSC RESEARCH GRANTS GRANTS ARE REVIEWED IN A THREE-STEP PROCESS: - A GRANT REVIEW COMMITTEE COMPOSED OF INDIVIDUALS KNOWLEDGEABLE ABOUT THE CLINICAL AND BASIC COMPONENTS OF TSC, REVIEW ALL GRANT APPLICATIONS FOR SCIENTIFIC MERIT, 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. - 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. - THE BOARD OF DIRECTORS THEN REVIEWS THE RECOMMENDATIONS OF THE SCIENCE AND MEDICAL COMMITTEE AND MAKES FINAL APPROVAL FOR THE FUNDING OF GRANT APPLICATIONS.ExplanationTxt

Schedule J IRS990ScheduleJ

FieldValueIRS element (for citing)
Compensation CommitteeYes (X)CompensationCommitteeInd
Form990 Of Other OrganizationsYes (X)Form990OfOtherOrganizationsInd
Compensation SurveyYes (X)CompensationSurveyInd
Board Or Committee ApprovalYes (X)BoardOrCommitteeApprovalInd
Severance PaymentfalseSeverancePaymentInd
Supplemental Nonqual Rtr PlanfalseSupplementalNonqualRtrPlanInd
Equity Based Comp ArrngmfalseEquityBasedCompArrngmInd
Comp Based On Revenue Of Flng OrgYes (true)CompBasedOnRevenueOfFlngOrgInd
Comp Bsd On Rev Related OrgsfalseCompBsdOnRevRelatedOrgsInd
Comp Bsd Net Earns Flng OrgYes (true)CompBsdNetEarnsFlngOrgInd
Comp Bsd Net Earns Rltd OrgsfalseCompBsdNetEarnsRltdOrgsInd
Any Non Fixed PaymentsfalseAnyNonFixedPaymentsInd
Initial Contract ExceptionfalseInitialContractExceptionInd

Rltd Org Officer Trst Key Empl RltdOrgOfficerTrstKeyEmplGrp (3 entries)

TitleTitleTxtBase Compensation Filing OrgBaseCompensationFilingOrgAmtCompensation Based On Rltd OrgsCompensationBasedOnRltdOrgsAmtBonus Filing OrganizationBonusFilingOrganizationAmountDeferred Compensation Flng OrgDeferredCompensationFlngOrgAmtDeferred Comp Rltd OrgsDeferredCompRltdOrgsAmtNontaxable Benefits Filing OrgNontaxableBenefitsFilingOrgAmtNontaxable Benefits Rltd OrgsNontaxableBenefitsRltdOrgsAmtTotal Compensation Filing OrgTotalCompensationFilingOrgAmtTotal Compensation Rltd OrgsTotalCompensationRltdOrgsAmtComp Report Prior990 Filing OrgCompReportPrior990FilingOrgAmtComp Report Prior990 Rltd OrgsCompReportPrior990RltdOrgsAmt
KARI L ROSEBECK
PRESIDENT & CEO$159,924$0$10,792$5,296$0$24,028$0$200,040$0$0$0
RICHARD A GOLLUB
CONTROLLER & CFO$124,917$0$7,800$4,191$0$29,153$0$166,061$0$0$0
STEVEN L ROBERDS
CHIEF SCIENTIFIC OFFICER$172,812$0$12,173$5,747$0$26,108$0$216,840$0$0$0

Supplemental Information Detail SupplementalInformationDetail (3 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
PART I, LINE 5A:KARI LUTHER ROSBECK, RICHARD GOLLUB, STEVE ROBERDS AND JAYE ISHAM ALL HAVE INCENTIVE COMPENSATION EQUAL TO A PERCENTAGE OF THEIR SALARIES BASED ON KEY PERFORMANCE OBJECTIVES AS ESTABLISHED BY THE COMPENSATION COMMITTEE.
PART I, LINE 6A:KARI LUTHER ROSBECK, RICHARD GOLLUB, STEVE ROBERDS AND JAYE ISHAM ALL HAVE INCENTIVE COMPENSATION EQUAL TO A PERCENTAGE OF THEIR SALARIES BASED ON KEY PERFORMANCE OBJECTIVES AS ESTABLISHED BY THE COMPENSATION COMMITTEE.
PART I & PART II:KARI LUTHER ROSBECK AND RICHARD GOLLUB ARE EMPLOYEES OF TUBEROUS SCLEROSIS ALLIANCE AND ARE COMPENSATED THROUGH TS ALLIANCE. THESE INDIVIDUALS SERVE THE ENDOWMENT WITHOUT COMPENSATION.

Schedule O IRS990ScheduleO

Supplemental Information Detail SupplementalInformationDetail (9 entries)

Form And Line ReferenceFormAndLineReferenceDescExplanationExplanationTxt
FORM 990, PART III, LINE 4D, OTHER PROGRAM SERVICES:Government Relations focuses on educating members of Congress about TSC to further TSC research, awareness and clinical care. The annual TS Alliance March on Capitol Hill to advocate for federal funding for the Tuberous Sclerosis Complex Research Program (TSCRP) at the Department of Defenses (DoD) Congressionally Directed Medical Research Program (CDMRP) took place in early March 2016. More than 100 members of the TSC community participated and asked their senators and representatives to sign onto Dear Colleague letters in support of the TSCRP. Many other advocates who were not able to travel to Washington, DC met with their senators and representatives back in their home states to make the case for continued funding. In the House, 165 Democratic and Republican Representatives signed a bipartisan Dear Colleague letter of support from Representatives Loretta Sanchez (D-CA) and Mike Fitzpatrick (R-PA). The Senate letter was sponsored by Senators Chris Murphy (D-CT) and Johnny Isakson (R-GA) and ended with 25 signatures. In FY2016, the TSC Research Program at the CDMRP received a $6 million appropriation, bringing the cumulative funding to $65 million since 2002 as a result of our successful grassroots efforts. Funding for FY2017 is pending on Congress passing the FY2017 budget but is currently included at $6 million. A $2 million increase over past years was added as an amendment put forth by Rep. Fitzpatrick during the House floor debate on the Defense Appropriations Act on June 15, 2016, but was removed in conference committee. 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; testing a combination of two drugs to treat LAM funded in FY2012; 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; a clinical research network 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. Building upon FY2010-funded research on glutamate receptors (mGluR5), several companies are now looking at the link between cognitive impairments in TSC to autism, anxiety, and other mental disorders. 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. Additional Government Relations efforts included a Congressional Briefing on Capitol Hill on March 2, 2016. Congressional staff and key members of the TSC research and grassroots communities attended the event. 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 TS Alliance participated in and presented at 27 professional meetings including: The Child Neurology Society Meeting; LAMposium and the LAM and Rare Lung Disease Conference; World Orphan Drug Congress; Association of Clinical Research Professionals Conference; Interagency Collaborative To Advance Research In Epilepsy (ICARE); FDA Patient Engagement Workshop; Partners Against Mortality in Epilepsy (PAME) Conference; 2016 Vancouver TSC Educational Conference in British Columbia; The NINDS Nonprofit Forum; Disability Policy Seminar; the Indication Expansion and Drug Repurposing Summit; CBIs Patient Registries Summit; 3rd Rare Disease Collaborative Summit hosted by EXL Events; Society for Neuroscience Annual Meeting; BIO Patient and Health Advocacy Summit; NORD Summit; the International TSC Research Conference in Portugal; and the American Thoracic Society. In addition, at the American Epilepsy Society (AES) annual meeting the TS Alliance hosted an Infantile Spasms Awareness Innovation Pavilion exhibit and a TSC reception for more than 100 researchers, clinicians, and community members. The TS Alliance also participated in two Special Interest Group scientific sessions, one on TSC and another on research resources made available by non-profit organizations advocating for rare disorders that involve epilepsy. Further, the Vice President of Outreach has ongoing collaboration with national educational networks, such as the Association for Middle Level Education (AMLE). She also collaborates with Parent Training Information Centers (PTIs) throughout the country. Providing children with appropriate education is one key to individuals having a good quality of life. EXPENSES $211,911. INCLUDING GRANTS OF $-0- REVENUES $17,900.
FORM 990, PART VI, SECTION A, LINE 6:MEMBERSHIP 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 SHALL BE 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 TS ALLIANCE IS A MEMBERSHIP-BASED ORGANIZATION, WHICH MEANS MEMBERS HELP ELECT THE BOARD OF DIRECTORS. THE TS ALLIANCE MEMBERSHIP PROGRAM ALLOWED INDIVIDUALS TO STATE THEIR INTENT TO BE A MEMBER FOR THE PURPOSE OF GOVERNANCE. THERE WERE NO LEVELS TO MEMBERSHIP IN 2016. ANYONE CAN BE A MEMBER AT NO COST.
FORM 990, PART VI, SECTION B, LINE 11:THE FORM 990 IS REVIEWED, IN DETAIL, BY THE BOARD OF DIRECTORS AUDIT AND FINANCE COMMITTEES. RECOMMENDATIONS ARE MADE BY THE COMMITTEE MEMBERS FOR ANY CHANGES/EDITS/ADDITIONS. AFTER THOSE HAVE BEEN INCORPORATED BOTH COMMITTEES VOTE WHETHER TO APPROVE AND THEN FORWARD THE 990 TO THE EXECUTIVE COMMITTEE. THE EXECUTIVE COMMITTEE PERFORMS THE FINAL REVIEW AND THEN VOTES WHETHER TO APPROVE ON BEHALF OF THE BOARD OF DIRECTORS. A COPY OF THE APPROVED 990 IS SHARED WITH THE ENTIRE BOARD.
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 MEMBERS 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 2016: BOARD MEMBER BRENDAN MANNING, PH.D, IS EMPLOYED AT HARVARD COLLEGE, WHICH RECEIVED $100,000 ROTHBERG COURAGE AWARD GRANT TO STUDY REPURPOSING APPROVED INHIBITORS OF PURINE SYNTHESIS FOR TSC TREATMENT. BOARD MEMBER MARTINA BEBIN, MD IS EMPLOYED BY THE UNIVERSITY OF ALABAMA BIRMINGHAM, WHICH RECEIVED A $19,800 FEE FOR SERVICE FOR ENTERING DATA INTO THE NATURAL HISTORY DATABASE. COMMITTEE MEETING AND BOARD MEETING WILL DULY RECORD SUCH ACTIONS.
FORM 990, PART VI, SECTION B, LINE 15:THE COMPENSATION COMMITTEE REVIEWS AND APPROVES THE SALARIES OF THE PRESIDENT/CEO, CHIEF SCIENTIFIC OFFICER, CONTROLLER & CFO, AND ANY EMPLOYEE APPEARING ON THE FORM 990, IN ACCORDANCE WITH THE TUBEROUS SCLEROSIS 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, CHANGES IN NET ASSETS:CHANGE IN INTEREST IN AFFLIIATE $530,471.
FORM 990, PART XII, LINE 2CTHE AUDIT REVIEW PROCESS HAS REMAINED UNCHANGED FROM THE PRIOR YEAR.

Schedule R IRS990ScheduleR

Id Related Tax Exempt Org IdRelatedTaxExemptOrgGrp

Disregarded Entity Name DisregardedEntityName

FieldValueIRS element (for citing)
Business Name Line1TUBEROUS SCLEROSIS ALLIANCE ENDOWMENT FDBusinessNameLine1Txt

US Address USAddress

FieldValueIRS element (for citing)
Address Line1801 ROEDER ROAD STE 750AddressLine1Txt
CitySILVER SPRINGCityNm
State AbbreviationMDStateAbbreviationCd
ZIP20910ZIPCd
FieldValueIRS element (for citing)
EIN521926919EIN
Primary ActivitiesSUPPORT ORGPrimaryActivitiesTxt
Legal Domicile StateMDLegalDomicileStateCd
Exempt Code Section501(C)(3)ExemptCodeSectionTxt
Public Charity Status11B, IIIPublicCharityStatusTxt
Direct Controlling NAN/ADirectControllingNACd
Controlled OrganizationfalseControlledOrganizationInd
FieldValueIRS element (for citing)
Receipt Of Int Annts Rnts RyltsfalseReceiptOfIntAnntsRntsRyltsInd
Gift Grnt Or Cap Contri To Oth OrgfalseGiftGrntOrCapContriToOthOrgInd
Gift Grnt Cap Contri From Oth OrgfalseGiftGrntCapContriFromOthOrgInd
Loans Or Guarantees To Other OrgfalseLoansOrGuaranteesToOtherOrgInd
Loans Or Guarantees From Oth OrgfalseLoansOrGuaranteesFromOthOrgInd
Div Related OrganizationfalseDivRelatedOrganizationInd
Asset Sale To Other OrgfalseAssetSaleToOtherOrgInd
Asset Purchase From Other OrgfalseAssetPurchaseFromOtherOrgInd
Asset ExchangefalseAssetExchangeInd
Rental Of Facilities To Oth OrgfalseRentalOfFacilitiesToOthOrgInd
Rental Of Fclts From Oth OrgfalseRentalOfFcltsFromOthOrgInd
Perform Of Services For Oth OrgfalsePerformOfServicesForOthOrgInd
Perform Of Services By Other OrgfalsePerformOfServicesByOtherOrgInd
Sharing Of FacilitiesYes (true)SharingOfFacilitiesInd
Paid Employees SharingYes (true)PaidEmployeesSharingInd
Reimbursement Paid To Other OrgfalseReimbursementPaidToOtherOrgInd
Reimbursement Paid By Other OrgfalseReimbursementPaidByOtherOrgInd
Transfer To Other OrgfalseTransferToOtherOrgInd
Transfer From Other OrgfalseTransferFromOtherOrgInd

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