NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC: Form 990, tax year 2021
View the entire original 990 at ProPublica ↗
- Organization
- NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC (EIN 95-3018799)
- Tax period
- 2021-01-01 to 2021-12-31
- Filed
- 2022-04-11
- IRS object ID
- 202241019349300349
- Schema version
- 2021v4.2
- Source
- Download XML · Original 990 at ProPublica
Every field in the e-filed return. Faint text is the IRS element name, for citing.
- Return header
- Form 990
- Schedule A
- Schedule B
- Schedule C
- Schedule D
- Schedule F
- Schedule G
- Schedule I
- Schedule J
- Schedule M
- Schedule O
- Schedule R
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2022-04-11T17:00:01-05:00 | ReturnTs |
| Tax Period End | 2021-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 420714325 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | RSM US LLP | BusinessNameLine1Txt |
Preparer US Address PreparerUSAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 2021 L STREET NW SUITE 400 | AddressLine1Txt |
| City | WASHINGTON | CityNm |
| State Abbreviation | DC | StateAbbreviationCd |
| ZIP | 20036 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return Type | 990 | ReturnTypeCd |
| Tax Period Begin | 2021-01-01 | 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 ASSOCIATION | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | NATI | BusinessNameControlTxt |
| Phone | 3015629890 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 8737 COLESVILLE ROAD 400 | AddressLine1Txt |
| City | SILVER SPRING | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 20910 | ZIPCd |
Business Officer BusinessOfficerGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Person | KARI L ROSBECK | PersonNm |
| Person Title | PRESIDENT & CEO | PersonTitleTxt |
| Phone | 3015629890 | PhoneNum |
| Signature | 2022-04-08 | 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 | XXX-XX-XXXX | SSN |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | ELIZABETH W HELLER | PreparerPersonNm |
| PTIN | P00397829 | PTIN |
| Phone | 2022932200 | PhoneNum |
| Preparation | 2022-04-08 | PreparationDt |
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 | 2021 | TaxYr |
| Build TS | 2022-09-23 18:48:47Z | 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 COLESVILLE ROAD 400 | AddressLine1Txt |
| City | SILVER SPRING | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 20910 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $9,061,703 | 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 | 29 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 29 | VotingMembersIndependentCnt |
| Total Employee | 22 | TotalEmployeeCnt |
| Total Volunteers | 2234 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $0 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $4,345,011 | PYContributionsGrantsAmt |
| CY Contributions Grants | $5,769,053 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $792,685 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $2,234,262 | CYProgramServiceRevenueAmt |
| PY Investment Income | $11,770 | PYInvestmentIncomeAmt |
| CY Investment Income | $5,670 | CYInvestmentIncomeAmt |
| PY Other Revenue | -$21,302 | PYOtherRevenueAmt |
| CY Other Revenue | $1,007,002 | CYOtherRevenueAmt |
| PY Total Revenue | $5,128,164 | PYTotalRevenueAmt |
| CY Total Revenue | $9,015,987 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $685,788 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $948,236 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $2,382,792 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $2,455,940 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $886,523 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $2,353,610 | PYOtherExpensesAmt |
| CY Other Expenses | $3,465,386 | CYOtherExpensesAmt |
| PY Total Expenses | $5,422,190 | PYTotalExpensesAmt |
| CY Total Expenses | $6,869,562 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | -$294,026 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | $2,146,425 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $11,657,873 | TotalAssetsBOYAmt |
| Total Assets EOY | $14,046,866 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $2,195,312 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $2,437,880 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $9,462,561 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $11,608,986 | 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 | $3,939,485 | ExpenseAmt |
| Grant | $948,236 | GrantAmt |
| Revenue | $3,190,730 | RevenueAmt |
| Desc | RESEARCH PROGRAM STIMULATES AND SUPPORTS BASIC, TRANSLATIONAL, AND CLINICAL RESEARCH ON THE VARIOUS MANIFESTATIONS OF TUBEROUS SCLEROSIS COMPLEX (TSC) TO FURTHER THE DEVELOPMENT OF CLINICAL THERAPIES AND, ULTIMATELY, A CURE FOR TSC. DIRECTED BY STEVEN L. ROBERDS, PHD, CHIEF SCIENTIFIC OFFICER, THE TSC ALLIANCE RESEARCH PROGRAM BUILDS AND FOSTERS COLLABORATIONS BETWEEN BASIC AND CLINICAL RESEARCHERS BY COLLECTING AND DISTRIBUTING TSC NATURAL HISTORY DATA AND BIOSAMPLES, THROUGH COLLABORATIVE PRECLINICAL AND CLINICAL RESEARCH PROGRAMS, AND BY HOSTING BIENNIAL INTERNATIONAL TSC RESEARCH CONFERENCES.SINCE 1984, THE TSC ALLIANCE HAS INVESTED $31 MILLION INTO TSC RESEARCH PROJECTS THROUGH GRANTS AND CONTRACTS: $19.5 MILLION IN RESEARCH GRANTS AND POSTDOCTORAL FELLOWSHIPS, $4.6 MILLION INTO THE NATURAL HISTORY DATABASE AND BIOSAMPLE REPOSITORY, $5.9 MILLION INTO THE PRECLINICAL CONSORTIUM, AND $0.95 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 THEIR 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 2021, 2,357 PEOPLE WITH TSC WERE ENROLLED IN THE PROJECT FROM AMONG 18 U.S.-BASED 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. IN 2020, THE TSC ALLIANCE ADDED A COVID-19 SUB-PROJECT TO ADDRESS DETAILED QUESTIONS ABOUT COVID-19 INFECTION IN INDIVIDUALS WITH TSC. FOR THIS PROJECT, THE TSC ALLIANCE OPENED THIS NHD SUB-PROJECT UP TO PARTICIPANTS WITH SPORADIC LYMPHANGIOLEIOMYOMATOSIS (S-LAM) IN PARTNERSHIP WITH THE LAM FOUNDATION. IN 2021, THE TSC ALLIANCE EXPANDED THE SUB-PROJECT'S VARIABLES TO INCLUDE ENTRIES FOR COVID-19 VACCINATIONS AND ANTIBODY TESTS. 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, 2021, THE TSC BIOSAMPLE REPOSITORY HAS ACQUIRED 2,000 BIOSAMPLES: 615 BLOOD SAMPLES FROM INDIVIDUALS WITH TSC ENROLLED IN THE NHD, 367 BUCCAL SAMPLES FROM INDIVIDUALS WITH TSC ENROLLED IN THE NHD, 154 TISSUE SAMPLES FROM INDIVIDUALS WITH TSC ENROLLED IN THE NHD, 465 BLOOD SAMPLES FROM THE TSC CLINICAL RESEARCH CONSORTIUM COLLABORATIVE PROJECTS, AND 389 DNA SAMPLES FROM THE TSC AUTISM CENTER OF EXCELLENCE NETWORK AUTISM BIOMARKER STUDY. 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 187 BLOOD SAMPLES VIA MOBILE PHLEBOTOMY. UNIQUE ADDITIONS IN 2021 INCLUDED THE ACQUISITION OF 100 TISSUES FROM THE MARYLAND BRAIN AND TISSUE BANK, FIVE CORD BLOOD SAMPLES FROM INFANTS WITHOUT TSC TO USE AS CONTROLS IN FUTURE EXPERIMENTS FOR THE NEWBORN SCREENING INITIATIVE, AND ONE CORD BLOOD SAMPLE FROM AN INDIVIDUAL WITH TSC. TO ENCOURAGE AND ENABLE MORE RESEARCHERS TO UTILIZE BIOSAMPLES, THE TSC ALLIANCE FUNDED THREE SEED GRANTS IN 2021, TOTALING $54,940.80, TO LABS THAT SUBMITTED MERITORIOUS AND INNOVATIVE IDEAS FOR RESEARCH ON TSC BIOSAMPLES.IN 2021, THE TSC ALLIANCE COMPLETED A WHOLE-GENOME SEQUENCING (WGS) PILOT STUDY USING DNA FROM BLOOD SAMPLES IN OUR BIOSAMPLE REPOSITORY TO DEMONSTRATE THE FEASIBILITY OF THIS APPROACH. THE TSC ALLIANCE SUBMITTED 20 DNA SAMPLES WHICH HAD NOT BEEN PREVIOUSLY ANALYZED TO THE TRANSLATIONAL GENOMICS RESEARCH INSTITUTE (TGEN) FOR WGS. RESULTS REVEALED DISEASE-CAUSING VARIANTS IN 19 OF 20 SAMPLES AND DEMONSTRATED FEASIBILITY OF WGS TO DELIVER VALUABLE INFORMATION TO BOTH PATIENTS AND RESEARCHERS. WE INTEND TO SCALE UP WGS IN COMING YEARS AS FUNDS ARE RAISED FOR THIS INITIATIVE.IN DECEMBER 2021, THE TSC ALLIANCE ADDED THE TSC SELF-REPORT PORTAL TO THE TSC NATURAL HISTORY DATABASE. THIS NEW PORTAL WILL PERMIT 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). THE TSC ALLIANCE IS HELPING THE TANDEM PROJECT TEAM VALIDATE THE UTILITY OF THE TAND-SQ FOR FUTURE USE IN A MOBILE APPLICATION.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. 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 BREEDING PAIRS OF L7-CRE-TSC2 MICE ON BEHALF OF THE PRECLINICAL CONSORTIUM. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $648,010 | ExpenseAmt |
| Grant | $0 | GrantAmt |
| Revenue | $183,500 | RevenueAmt |
| Desc | 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 2021 THE TSC ALLIANCE FACILITATED 8,742 PEER-TO-PEER SUPPORTS FROM ADULT REGIONAL COORDINATORS (12 VOLUNTEERS IN 8 REGIONS NATIONWIDE), CLINIC AMBASSADORS (16 VOLUNTEERS IN 19 TSC CLINICS AND TSC CENTERS OF EXCELLENCE NATIONWIDE), DEPENDENT ADULT TRANSITION RESOURCE COORDINATORS (31 VOLUNTEERS IN 26 STATES AND PUERTO RICO), EDUCATION PARENT MENTORS (29 VOLUNTEERS IN 21 STATES), AND COMMUNITY ALLIANCE LEADERS (47 VOLUNTEERS IN 33 REGIONS ACROSS THE UNITED STATES) WITH ACTIVE FUTURE LEADERS (8 VOLUNTEERS) AND PAST FUTURE LEADERS (6 VOLUNTEERS) WHO HAVE AGREED TO REMAIN AS LEADERS FOR OTHER YOUNG ADULTS WITH TSC.EDUCATION PARENT MENTORS ATTENDED 55 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 33 VOLUNTEER BRANCHES OF THE ORGANIZATION, CALLED COMMUNITY ALLIANCES, THAT PROVIDE SUPPORT AND COMMUNITY EDUCATION IN ALL 50 STATES. TO ENSURE THE TSC COMMUNITY CONTINUE TO RECEIVE UPDATED INFORMATION ABOUT TSC, TSC-ASSOCIATED NEUROPSYCHIATRIC DISORDERS (TAND),TRANSITION AND RESEARCH, THE TSC ALLIANCE DEVELOPED AN E-WEBINAR SERIES. IN 2021, WE HOSTED 27 E-WEBINARS WITH 1,219 CUMULATIVE LIVE ATTENDEES, 5,567 CUMULATIVE RECORDING VIEWS AND 3,123 CUMULATIVE LANDING PAGES VISITS. ADDITIONALLY, WE HELD THE FOLLOWING WEBINARS: APRIL COVID VACCINE TOWN HALL - 66 LIVE ATTENDEES, 304 VIDEO VIEWS; ABC TO SAP WEBINAR - 50 LIVE ATTENDEES, 458 VIDEO VIEWS; AUGUST COVID UPDATE TOWN HALL - 307 LIVE ATTENDEES, 463 VIDEO VIEWS. ADDING IN LIVE ATTENDEES WITH ADDITIONAL WEBINARS TOTAL LIVE AUDIENCE FOR WEBINARS IS 1,642, TOTAL CUMULATIVE RECORDING VIEWS IS 6,636 AND 3,123 CUMULATIVE LANDING PAGE VISITS.IN 2021, THE TSC ALLIANCE LAUNCHED THE TSC NAVIGATOR, 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. REGARDLESS OF AGE, TSC NAVIGATOR ALSO HELPS INDIVIDUALS WITH TSC AND THEIR CAREGIVERS FACE COMPLEX SITUATIONS, OVERCOME ACCESS ISSUES, AND ADDRESS INSURANCE BARRIERS. THE TSC NAVIGATOR LAUNCHED OCTOBER 14, 2019 AND RECEIVED MORE THAN 2,700 VISITS BETWEEN LAUNCH AND YEAR END.587 INDIVIDUALS AND FAMILIES WERE ASSISTED DIRECTLY BY THE DIRECTOR OF MEDICAL AFFAIRS AND TEAM ACTING AS SUPPORT NAVIGATORS. OF THE ASSISTANCE PROVIDED, 78 WERE MEDICATION-RELATED, 60 WERE TAND-RELATED, 88 WERE NEW DIAGNOSIS, AND 252 WERE FOR ASSISTANCE WITH ACCESS TO CARE WITH 46 COVID-19 RELATED. THE REMAINDER SERVED A VARIETY OF OTHER NEEDS. | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $524,283 | ExpenseAmt |
| Grant | $0 | GrantAmt |
| Revenue | $69,500 | RevenueAmt |
| Desc | PUBLIC HEALTH EDUCATION HEIGHTENS AWARENESS OF TSC THROUGHOUT THE GENERAL PUBLIC TO BROADEN THE SCOPE OF SUPPORT AND UNDERSTANDING BEYOND TSC INDIVIDUALS AND THEIR FAMILIES. ONE MAJOR PROJECT IN 2021 WAS CHANGING THE ORGANIZATION'S NAME TO TSC ALLIANCE, WHICH WAS FORMALLY ANNOUNCED SUNDAY, MAY 16.DURING 2021, THE TSC ALLIANCE ALSO PRODUCED TWO ISSUES OF ITS NATIONAL MAGAZINE, PERSPECTIVE, WHICH IS MAILED TO APPROXIMATELY 17,900 CONSTITUENTS AS WELL AS POSTED ON THE WEBSITE. THE TSC ALLIANCE'S PODCAST SERIES, CALLED TSC NOW, PRODUCED 12 EPISODES WITH 2,186 DOWNLOADS. SIX ISSUES OF THE ELECTRONIC TSC MATTERS NEWSLETTER WERE DISTRIBUTED TO 1,340 SUBSCRIBERS. THE TSC ALLIANCE'S WEBSITE INCREASES AWARENESS AND PROVIDES EXTENSIVE EDUCATION THROUGH AN AVERAGE OF MORE THAN 24,000 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 10,000 MEMBERS, WHILE ITS TWITTER ACCOUNT HAS 2,579 FOLLOWERS AND INSTAGRAM HAS 2,762 FOLLOWERS. TO INCREASE PUBLIC AWARENESS, THE TSC ALLIANCE PARTICIPATED IN THE SEVENTH ANNUAL TSC GLOBAL AWARENESS DAY ON MAY 15 AS WELL AS TSC AWARENESS MONTH THROUGHOUT MAY. THE TSC ALLIANCE ALSO HEAVILY PROMOTED THE INAUGURAL SEIZURE ACTION PLAN AWARENESS WEEK (FEBRUARY 8-14) AND INFANTILE SPASMS AWARENESS WEEK (DECEMBER 1 TO 7). THESE AWARENESS CAMPAIGNS ALONG WITH THE ORGANIZATIONS VARIOUS NEWS RELEASES CULMINATED IN MORE THAN 1 BILLION CUMULATIVE IMPRESSIONS. | Desc |
Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $353,569 | ExpenseAmt |
| Revenue | $34,070 | RevenueAmt |
| Desc | GOVERNMENT RELATIONS EFFORTS FOCUS ON INCREASING FEDERAL AND STATE APPROPRIATIONS FOR TSC RESEARCH, RAISING AWARENESS, AND COLLABORATING WITH GOVERNMENT PARTNERS TO DRIVE TSC RESEARCH FORWARD AND IMPROVE CLINICAL CARE AND TREATMENT OPTIONS FOR INDIVIDUALS WITH TSC. ON THE STATE LEVEL, THE TSC ALLIANCE ADVOCATED FOR STATE FUNDING FOR TSC CENTERS IN MISSOURI AND MARYLAND, RESULTING IN AT LEAST $750,000 IN STATE APPROPRIATIONS. THE ANNUAL TSC ALLIANCE MARCH ON CAPITOL HILL TO ADVOCATE FOR FEDERAL FUNDING FOR THE TUBEROUS SCLEROSIS COMPLEX RESEARCH PROGRAM (TSCRP) AT THE DEPARTMENT OF DEFENSE'S (DOD) CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM (CDMRP) TOOK PLACE IN EARLY MARCH 2021. MORE THAN 135 PEOPLE PARTICIPATED IN THE VIRTUAL MARCH ON CAPITOL HILL THE WEEK OF MARCH 1-5, 2021. ADVOCATES MADE VIRTUAL APPOINTMENTS WITH 75 SENATE AND 280 HOUSE OFFICES TO ADVOCATE FOR A CONTINUATION OF $8 MILLION IN FUNDING FOR THE TSCRP. THE HOUSE TSCRP DEAR COLLEAGUE LETTER SPONSORED BY REPRESENTATIVES MULLIN (R-OK) AND RASKIN (D-MD) CLOSED WITH 202 SIGNERS. THE SENATE LETTER SPONSORED BY SENATORS CRAMER (R-ND) AND HEINRICH (D-NM) CLOSED WITH 34 SIGNERS. TOTAL FUNDING FOR THE TSCRP HAS BEEN $105 MILLION SINCE 2002. PRESIDENT BIDEN JUST SIGNED THE FY22 DEFENSE BILL INTO LAW ON MARCH 15, 2022, WHICH INCLUDED $8 MILLION FOR THE TSCRP.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. 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 10 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 AUGUST, TWO NEW PUBLICATIONS WERE ACCEPTED BY PEDIATRIC NEUROLOGY, "UPDATED INTERNATIONAL TSC DIAGNOSTIC CRITERIA AND SURVEILLANCE AND MANAGEMENT RECOMMENDATIONS AND "BEYOND THE GUIDELINES: HOW WE CAN IMPROVE HEALTHCARE FOR PEOPLE WITH TSC AROUND THE WORLD." THE NEW PAPERS PROVIDE THE FIRST SIGNIFICANT UPDATES TO THE INTERNATIONAL GUIDELINES SINCE 2013 BECAUSE OF NEW MEDICATIONS AND ADVANCES IN TREATMENTS. TO ADDRESS THE CHANGES, A WORKING GROUP LED BY DARCY A. KRUEGER, MD, PHD, OF CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER, AND HOPE NORTHRUP, MD, MCGOVERN MEDICAL SCHOOL, UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT HOUSTON, INCLUDED 80 PARTICIPANTS FROM 16 COUNTRIES.THE TSC ALLIANCE PARTICIPATED IN OR PRESENTED AT 37 PROFESSIONAL MEETINGS IN 2021 INCLUDING CURING THE EPILEPSIES 2020: SETTING RESEARCH PRIORITIES, NIMH 2021 VIRTUAL WORKSHOP: GENE-BASED THERAPEUTICS FOR RARE NEURODEVELOPMENTAL PSYCHIATRIC DISORDERS, TSC ALLIANCE: NEWBORN SCREENING WORKSHOP, ATS BOARD OF DIRECTORS MEETING, RARE DISEASE DAY AT NIH, ISAN MEMBERSHIP MEETING, INAUGURAL O'DONNELL BRAIN INSTITUTE SYMPOSIUM ON AUTISM SPECTRUM DISORDERS, OVERCOMING BARRIERS TO DIVERSIFYING CLINICAL TRIALS (RDCRN), ELHS SPRING LEARNING SESSION, HEALTH RESEARCH ALLIANCE CULTURAL COMPETENCY WORKSHOP WITH BME, RESEARCH!AMERICA ANNUAL MEETING OF THE MEMBERS, MEDICAID AND CHIP PAYMENT AND ACCESS COMMISSION (MACPAC) WEBINAR, ICARE MEETING, TRANS-NIH MEETING, ATS PAR MEET-THE-EXPERTS PATIENT/FAMILY FORUM, ATS SCIENTIFIC SYMPOSIUM, USF DIVERSITY, EQUITY, AND INCLUSION IN THE WORKPLACE SERIES, ISAN MEMBERSHIP MEETING-SUMMER, GLOBAL GENES RARE DRUG DEVELOPMENT SYMPOSIUM: PRECLINICAL MODELING-WHAT ADVOCATES NEED TO KNOW ABOUT ANIMAL & CELL MODELS, INTERNATIONAL TSC RESEARCH CONFERENCE-UK, RARE DISEASE PATIENT-FOCUSED DRUG DEVELOPMENT (PFDD) GUIDANCE COMPENDIUM, GLOBAL GENES ACCESS WORKING GROUP LUNCH BRIEFING: MEDICAID COVERAGE FOR GENOMIC SEQUENCING, NINDS NONPROFIT FORUM ADVISORY BOARD MEETING-INDUSTRY PARTNER, GLOBAL GENES: ACCESS WORKING GROUP, LGS FOUNDATION MEETING OF THE MINDS, EVERYLIFE VIRTUAL NEWBORN SCREENING BOOTCAMP, CNF SYMPOSIUM (WITHIN CNS), RDCRN FALL MEETING, NIAMS, BIO, VIRTUAL INTERNATIONAL TSC & LAM RESEARCH CONFERENCE, ATS PAR ANNUAL PLANNING MEETING, TSCI VIRTUAL WORKSHOP, TSCRP PROGRAMMATIC REVIEW & VISION SETTING, AMERICAN EPILEPSY SOCIETY ANNUAL MEETING, AND INFANTILE SPASMS ACTION NETWORK MEMBERS MEETING. | Desc |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Prog Srvc Expense | $353,569 | TotalOtherProgSrvcExpenseAmt |
| Total Other Prog Srvc Revenue | $34,070 | TotalOtherProgSrvcRevenueAmt |
| Total Program Service Expenses | $5,465,347 | TotalProgramServiceExpensesAmt |
| Described In Section501c3 | Yes (1) | DescribedInSection501c3Ind |
| Schedule B Required | Yes (1) | ScheduleBRequiredInd |
| Political Campaign Acty | 0 | PoliticalCampaignActyInd |
| Lobbying Activities | Yes (1) | LobbyingActivitiesInd |
| Subject To Proxy Tax | 0 | SubjectToProxyTaxInd |
| Donor Advised Fund | 0 | DonorAdvisedFundInd |
| Conservation Easements | 0 | ConservationEasementsInd |
| Collections Of Art | 0 | CollectionsOfArtInd |
| Credit Counseling | 0 | CreditCounselingInd |
| Donor Rstr Or Quasi Endowments | Yes (1) | DonorRstrOrQuasiEndowmentsInd |
| Report Land Building Equipment | Yes (1) | ReportLandBuildingEquipmentInd |
| Report Investments Other Sec | 0 | ReportInvestmentsOtherSecInd |
| Report Program Related Invst | 0 | ReportProgramRelatedInvstInd |
| Report Other Assets | Yes (1) | ReportOtherAssetsInd |
| Report Other Liabilities | Yes (1) | ReportOtherLiabilitiesInd |
| Include FIN48 Footnote | 0 | IncludeFIN48FootnoteInd |
| Independent Audit Fincl Stmt | 0 | IndependentAuditFinclStmtInd |
| Consolidated Audit Fincl Stmt | Yes (1) | ConsolidatedAuditFinclStmtInd |
| School Operating | 0 | SchoolOperatingInd |
| Foreign Office | 0 | ForeignOfficeInd |
| Foreign Activities | Yes (1) | ForeignActivitiesInd |
| More Than5000 K To Org | Yes (1) | MoreThan5000KToOrgInd |
| More Than5000 K To Individuals | 0 | MoreThan5000KToIndividualsInd |
| Professional Fundraising | 0 | ProfessionalFundraisingInd |
| Fundraising Activities | Yes (1) | FundraisingActivitiesInd |
| Gaming Activities | 0 | GamingActivitiesInd |
| Operate Hospital | 0 | OperateHospitalInd |
| Grants To Organizations | Yes (1) | GrantsToOrganizationsInd |
| Grants To Individuals | 0 | GrantsToIndividualsInd |
| Schedule J Required | Yes (1) | ScheduleJRequiredInd |
| Tax Exempt Bonds | 0 | TaxExemptBondsInd |
| Engaged In Excess Benefit Trans | 0 | EngagedInExcessBenefitTransInd |
| PY Excess Benefit Trans | 0 | PYExcessBenefitTransInd |
| Loan Outstanding | 0 | LoanOutstandingInd |
| Grant To Related Person | 0 | GrantToRelatedPersonInd |
| Business Rln With Org Mem | 0 | BusinessRlnWithOrgMemInd |
| Business Rln With Fam Mem | 0 | BusinessRlnWithFamMemInd |
| Business Rln With35 Ctrl Ent | 0 | BusinessRlnWith35CtrlEntInd |
| Deductible Non Cash Contri | Yes (1) | DeductibleNonCashContriInd |
| Deductible Art Contribution | 0 | DeductibleArtContributionInd |
| Terminate Operations | 0 | TerminateOperationsInd |
| Partial Liquidation | 0 | PartialLiquidationInd |
| Disregarded Entity | 0 | DisregardedEntityInd |
| Related Entity | Yes (1) | RelatedEntityInd |
| Related Organization Ctrl Ent | 0 | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | 0 | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | 0 | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (1) | ScheduleORequiredInd |
| IRP Document | 31 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 22 | 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 | 29 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 29 | 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 | THE ORGANIZATION | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Phone | 3015629890 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 8737 COLESVILLE ROAD 400 | AddressLine1Txt |
| City | SILVER SPRING | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 20910 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (37 entries)
| TitleTitleTxt | Average Hours Per WeekAverageHoursPerWeekRt | Average Hours Per Week Rltd OrgAverageHoursPerWeekRltdOrgRt | Individual Trustee Or DirectorIndividualTrusteeOrDirectorInd | OfficerOfficerInd | Reportable Comp From OrgReportableCompFromOrgAmt | Reportable Comp From Rltd OrgReportableCompFromRltdOrgAmt | Other CompensationOtherCompensationAmt | Key EmployeeKeyEmployeeInd | Highest Compensated EmployeeHighestCompensatedEmployeeInd |
|---|---|---|---|---|---|---|---|---|---|
| PETER CRINO MD PHD | |||||||||
| CHAIR | 5.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| WILLIAM JOSEPH | |||||||||
| VICE CHAIR | 5.00 | 1.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| CHRIS RUSSELL | |||||||||
| IMMEDIATE PAST CHAIR | 5.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| LAURA MARKS | |||||||||
| SECRETARY | 5.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| PAUL WAXLAX | |||||||||
| TREASURER | 5.00 | 1.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| DEREK BAUER | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| JULIE BLUM | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| MATT BOLGER | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| EDWARD BURKHALTER | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| MARK CARROLL | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| SARAH CHIEFFO | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| DAVID COIT | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| MARGARET COX | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| TIMOTHY DILLS | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| BONNIE HOGUE DUFFY | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| TANJALA GIPSON | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| STEVEN GOLDSTEIN | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| ROBERT GRANDIA | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| DANA HOLINKA | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| JESSICA KREFTING | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| DARCY KRUEGER | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| HEATHER LENS | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| JIM MAGINN | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| DIANE MCSWAIN | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| MUSTAFA SAHIN | |||||||||
| BOARD MEMBER | 2.00 | 1.00 | Yes (X) | $0 | $0 | $0 | |||
| SEAN SHILLINGER | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| MATTHEW SIMONIAN | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| VANESSA VAZQUEZ | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| TARA ZIMMERMAN | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| KARI L ROSBECK | |||||||||
| PRESIDENT & CEO | 54.00 | 1.00 | Yes (X) | $214,608 | $3,974 | $33,232 | |||
| RICHARD GOLLUB | |||||||||
| CFO | 47.00 | 3.00 | Yes (X) | $156,734 | $10,004 | $32,878 | |||
| STEVEN L ROBERDS | |||||||||
| CHIEF SCIENTIFIC OFFICER | 45.00 | 0.00 | $228,854 | $0 | $26,998 | Yes (X) | |||
| DEAN RAGER-AGUIAR | |||||||||
| DIRECTOR, PRECLINICAL RESEARCH | 45.00 | 0.00 | $163,695 | $0 | $32,110 | Yes (X) | |||
| JAYE D ISHAM | |||||||||
| VP, COMMUNICATIONS STRATEGY | 45.00 | 0.00 | $121,765 | $0 | $4,244 | Yes (X) | |||
| LISA M MOSS | |||||||||
| SR. DIRECTOR, DONOR RELATIONS | 45.00 | 0.00 | $109,646 | $0 | $26,893 | Yes (X) | |||
| APRIL COOPER | |||||||||
| DIRECTOR, COMMUNITY PROGRAMS | 45.00 | 0.00 | $108,589 | $0 | $3,418 | Yes (X) | |||
| ASHLEY POUNDERS | |||||||||
| DIRECTOR, MEDICAL AFFAIRS | 45.00 | 0.00 | $101,208 | $0 | $11,671 | Yes (X) | |||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $1,205,099 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $13,978 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $171,444 | 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 (3 entries)
| Address Line1ContractorAddress/USAddress/AddressLine1Txt | CityContractorAddress/USAddress/CityNm | State AbbreviationContractorAddress/USAddress/StateAbbreviationCd | ZIPContractorAddress/USAddress/ZIPCd | ServicesServicesDesc | CompensationCompensationAmt |
|---|---|---|---|---|---|
| PSYCHOGENICS INC | |||||
| 20 GRAMERCY PARK SOUTH | NEW YORK | NY | 10003 | RESEARCH LAB SERVICES | $1,564,533 |
| VAN ANDEL RESEARCH INSTITUTE | |||||
| 333 BOSTWICK AVE NE | GRAND RAPIDS | MI | 49503 | LABORATORY SERVICES | $227,915 |
| CAVAROCCHI RUSCIO DENNIS AND ASSOCIATES | |||||
| 600 MARYLAND AVE SW | WASHINGTON | DC | 20024 | GOVERNMENT RELATIONS | $112,980 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 3 | CntrctRcvdGreaterThan100KCnt |
| Federated Campaigns | $50,596 | FederatedCampaignsAmt |
| Membership Dues | $4,132 | MembershipDuesAmt |
| Fundraising | $955,330 | FundraisingAmt |
| Related Organizations | $226,000 | RelatedOrganizationsAmt |
| All Other Contributions | $4,532,995 | AllOtherContributionsAmt |
| Noncash Contributions | $285,267 | NoncashContributionsAmt |
| Total Contributions | $5,769,053 | TotalContributionsAmt |
Program Service Revenue ProgramServiceRevenueGrp (2 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt |
|---|---|---|---|
| CONTRACT REVENUE | 900099 | $2,120,485 | $2,120,485 |
| CONFERENCE REVENUE | 900099 | $113,777 | $113,777 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | $2,234,262 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $3,809 | TotalRevenueColumnAmt |
| Exclusion | $3,809 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $1,861 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $0 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $1,861 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $1,861 | TotalRevenueColumnAmt |
| Exclusion | $1,861 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $234,482 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $955,330 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $45,716 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $188,766 | TotalRevenueColumnAmt |
| Exclusion | $188,766 | ExclusionAmt |
Other Revenue Misc OtherRevenueMiscGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | CHANGE INT-ENDOWMENT | Desc |
| Business | 900099 | BusinessCd |
| Total Revenue Column | $818,236 | TotalRevenueColumnAmt |
| Exclusion | $818,236 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | $818,236 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $9,015,987 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $2,234,262 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $1,012,672 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $833,329 | TotalAmt |
| Program Services | $833,329 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $114,907 | TotalAmt |
| Program Services | $114,907 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $797,701 | TotalAmt |
| Program Services | $489,000 | ProgramServicesAmt |
| Management And General | $223,016 | ManagementAndGeneralAmt |
| Fundraising | $85,685 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,242,312 | TotalAmt |
| Program Services | $792,478 | ProgramServicesAmt |
| Management And General | $103,838 | ManagementAndGeneralAmt |
| Fundraising | $345,996 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $275,780 | TotalAmt |
| Program Services | $173,018 | ProgramServicesAmt |
| Management And General | $38,279 | ManagementAndGeneralAmt |
| Fundraising | $64,483 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $140,147 | TotalAmt |
| Program Services | $87,925 | ProgramServicesAmt |
| Management And General | $19,453 | ManagementAndGeneralAmt |
| Fundraising | $32,769 | FundraisingAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $38,838 | TotalAmt |
| Program Services | $25,875 | ProgramServicesAmt |
| Management And General | $10,766 | ManagementAndGeneralAmt |
| Fundraising | $2,197 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $26,179 | TotalAmt |
| Management And General | $26,179 | ManagementAndGeneralAmt |
Fees For Services Lobbying FeesForServicesLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $112,980 | TotalAmt |
| Program Services | $112,980 | ProgramServicesAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $369,033 | TotalAmt |
| Program Services | $228,093 | ProgramServicesAmt |
| Management And General | $16,900 | ManagementAndGeneralAmt |
| Fundraising | $124,040 | FundraisingAmt |
Advertising AdvertisingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $24,836 | TotalAmt |
| Program Services | $24,608 | ProgramServicesAmt |
| Fundraising | $228 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $256,679 | TotalAmt |
| Program Services | $140,716 | ProgramServicesAmt |
| Management And General | $8,501 | ManagementAndGeneralAmt |
| Fundraising | $107,462 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $172,599 | TotalAmt |
| Program Services | $90,501 | ProgramServicesAmt |
| Management And General | $20,808 | ManagementAndGeneralAmt |
| Fundraising | $61,290 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $128,139 | TotalAmt |
| Program Services | $80,284 | ProgramServicesAmt |
| Management And General | $17,669 | ManagementAndGeneralAmt |
| Fundraising | $30,186 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $13,890 | TotalAmt |
| Program Services | $8,415 | ProgramServicesAmt |
| Management And General | $1,692 | ManagementAndGeneralAmt |
| Fundraising | $3,783 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $76,847 | TotalAmt |
| Program Services | $76,630 | ProgramServicesAmt |
| Management And General | $55 | ManagementAndGeneralAmt |
| Fundraising | $162 | FundraisingAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $73,200 | TotalAmt |
| Program Services | $50,381 | ProgramServicesAmt |
| Management And General | $6,465 | ManagementAndGeneralAmt |
| Fundraising | $16,354 | FundraisingAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $11,222 | TotalAmt |
| Program Services | $7,040 | ProgramServicesAmt |
| Management And General | $1,558 | ManagementAndGeneralAmt |
| Fundraising | $2,624 | FundraisingAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| PRECLINICAL CONSORTIUM | $1,824,180 | $1,824,180 | ||
| NHD BIOSAMPLE REPOSIT | $266,285 | $266,285 | ||
| DUES AND SUBSCRIPTIONS | $48,878 | $29,979 | $12,767 | $6,132 |
| MISCELLANEOUS EXPENSES | $8,527 | $3,443 | $3,848 | $1,236 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $13,074 | TotalAmt |
| Program Services | $5,280 | ProgramServicesAmt |
| Management And General | $5,898 | ManagementAndGeneralAmt |
| Fundraising | $1,896 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $6,869,562 | TotalAmt |
| Program Services | $5,465,347 | ProgramServicesAmt |
| Management And General | $517,692 | ManagementAndGeneralAmt |
| Fundraising | $886,523 | FundraisingAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Joint Costs | Yes (X) | JointCostsInd |
Total Joint Costs TotalJointCostsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $33,150 | TotalAmt |
| Program Services | $16,575 | ProgramServicesAmt |
| Management And General | $0 | ManagementAndGeneralAmt |
| Fundraising | $16,575 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,097,500 | BOYAmt |
| EOY | $1,459,324 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,238,876 | BOYAmt |
| EOY | $1,242,438 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,578,285 | BOYAmt |
| EOY | $2,698,495 | EOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $113,491 | BOYAmt |
| EOY | $99,173 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $392,003 | BOYAmt |
| EOY | $620,148 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $719,159 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $281,990 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $510,367 | BOYAmt |
| EOY | $437,169 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $6,727,351 | BOYAmt |
| EOY | $7,490,119 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $11,657,873 | BOYAmt |
| EOY | $14,046,866 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $435,478 | BOYAmt |
| EOY | $472,049 | EOYAmt |
Deferred Revenue DeferredRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $422,226 | BOYAmt |
| EOY | $676,798 | EOYAmt |
Other Liabilities OtherLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,337,608 | BOYAmt |
| EOY | $1,289,033 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,195,312 | BOYAmt |
| EOY | $2,437,880 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows FASB117 | Yes (X) | OrganizationFollowsFASB117Ind |
No Donor Restriction Net Assets NoDonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,954,477 | BOYAmt |
| EOY | $6,580,605 | EOYAmt |
Donor Restriction Net Assets DonorRestrictionNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $3,508,084 | BOYAmt |
| EOY | $5,028,381 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $9,462,561 | BOYAmt |
| EOY | $11,608,986 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $11,657,873 | BOYAmt |
| EOY | $14,046,866 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | $2,146,425 | ReconcilationRevenueExpnssAmt |
| Other Changes In Net Assets | $0 | OtherChangesInNetAssetsAmt |
| 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 | $3,949,953 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $4,105,376 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $5,527,543 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $4,345,011 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $5,769,053 | CurrentTaxYearAmt |
| Total | $23,696,936 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $3,949,953 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $4,105,376 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $5,527,543 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $4,345,011 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $5,769,053 | CurrentTaxYearAmt |
| Total | $23,696,936 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $3,559,289 | SubstantialContributorsTotAmt |
| Public Support Total170 | $20,137,647 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $10,393 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $13,784 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $27,444 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $11,188 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $3,809 | CurrentTaxYearAmt |
| Total | $66,618 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $642 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $1,243 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $714 | CurrentTaxYearMinus2YearsAmt |
| Total | $2,599 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $23,766,153 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $10,327,170 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.84730 | PublicSupportCY170Pct |
| Public Support PY170 | 0.84300 | 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 OF 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 | $1,127 | FilingOrganizationsTotalAmt |
Total Direct Lobbying TotalDirectLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $153,012 | FilingOrganizationsTotalAmt |
Total Lobbying Expend TotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $154,139 | FilingOrganizationsTotalAmt |
Other Exempt Purpose Expend OtherExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $6,795,167 | FilingOrganizationsTotalAmt |
Total Exempt Purpose Expend TotalExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $6,949,306 | FilingOrganizationsTotalAmt |
Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $497,465 | FilingOrganizationsTotalAmt |
Grassroots Nontaxable GrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $124,366 | 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 | $450,555 | CurrentYearMinus3Amt |
| Current Year Minus2 | $445,393 | CurrentYearMinus2Amt |
| Current Year Minus1 | $423,685 | CurrentYearMinus1Amt |
| Current Year | $497,465 | CurrentYearAmt |
| Total | $1,817,098 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Lobbying Ceiling | $2,725,647 | LobbyingCeilingAmt |
Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $149,340 | CurrentYearMinus3Amt |
| Current Year Minus2 | $165,226 | CurrentYearMinus2Amt |
| Current Year Minus1 | $123,014 | CurrentYearMinus1Amt |
| Current Year | $154,139 | CurrentYearAmt |
| Total | $591,719 | TotalAmt |
Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $112,639 | CurrentYearMinus3Amt |
| Current Year Minus2 | $111,348 | CurrentYearMinus2Amt |
| Current Year Minus1 | $105,921 | CurrentYearMinus1Amt |
| Current Year | $124,366 | CurrentYearAmt |
| Total | $454,274 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grassroots Ceiling | $681,411 | GrassrootsCeilingAmt |
Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $823 | CurrentYearMinus3Amt |
| Current Year Minus2 | $2,491 | CurrentYearMinus2Amt |
| Current Year Minus1 | $895 | CurrentYearMinus1Amt |
| Current Year | $1,127 | CurrentYearAmt |
| Total | $5,336 | TotalAmt |
Schedule D IRS990ScheduleD
CY Endwmt Fund CYEndwmtFundGrp
| 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 Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp
| 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 Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp
| 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 Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp
| 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 |
CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $5,293,989 | BeginningYearBalanceAmt |
| Contributions | $92,635 | ContributionsAmt |
| Investment Earnings Or Losses | $739,072 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $403,000 | OtherExpendituresAmt |
| Administrative Expenses | $67,141 | AdministrativeExpensesAmt |
| End Year Balance | $5,655,555 | EndYearBalanceAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Board Designated Balance EOY | 0.84560 | BoardDesignatedBalanceEOYPct |
| Prmnnt Endowment Balance EOY | 0.13100 | PrmnntEndowmentBalanceEOYPct |
| Term Endowment Balance EOY | 0.02340 | 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 | $71,475 | DepreciationAmt |
| Book Value | $377,797 | BookValueAmt |
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $189,615 | OtherCostOrOtherBasisAmt |
| Depreciation | $134,797 | DepreciationAmt |
| Book Value | $54,818 | BookValueAmt |
Other Land Buildings OtherLandBuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $80,272 | OtherCostOrOtherBasisAmt |
| Depreciation | $75,718 | DepreciationAmt |
| Book Value | $4,554 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $437,169 | TotalBookValueLandBuildingsAmt |
Other Assets Org OtherAssetsOrgGrp (2 entries)
| DescDesc | Book ValueBookValueAmt |
|---|---|
| INTEREST IN NET ASSETS OF AFFILIATE | $6,711,748 |
| OPERATING LEASE RIGHT-OF-USE ASSET | $778,371 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Other Assets | $7,490,119 | TotalBookValueOtherAssetsAmt |
Other Liabilities Org OtherLiabilitiesOrgGrp (2 entries)
| DescDesc | AmtAmt |
|---|---|
| DEFERRED RENT & LEASE INCENTIVE | $1,285,691 |
| DUE TO AFFILIATE | $3,342 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Liability | $1,289,033 | TotalLiabilityAmt |
| Total Rev Etc Audited Fincl Stmt | $9,050,015 | TotalRevEtcAuditedFinclStmtAmt |
| Donated Services And Use Fclts | $34,028 | DonatedServicesAndUseFcltsAmt |
| Revenue Not Reported | $34,028 | RevenueNotReportedAmt |
| Revenue Subtotal | $9,015,987 | RevenueSubtotalAmt |
| Revenue Not Reported Fincl Stmt | $0 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $9,015,987 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $6,903,590 | TotExpnsEtcAuditedFinclStmtAmt |
| Donated Services Use Fclts | $34,028 | DonatedServicesUseFcltsAmt |
| Expenses Not Reported | $34,028 | ExpensesNotReportedAmt |
| Expenses Subtotal | $6,869,562 | ExpensesSubtotalAmt |
| Expenses Not Rpt Fincl Stmt | $0 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $6,869,562 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART V, LINE 4: | FormAndLineReferenceDesc |
| Explanation | THE ALLIANCE'S ENDOWMENTS CONSIST OF TWO FUNDS ESTABLISHED FOR DIFFERENT PURPOSES. THE ALLIANCE'S 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. | ExplanationTxt |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp (4 entries)
| RegionRegionTxt | OfficesOfficesCnt | EmployeeEmployeeCnt | Type Of Activities ConductedTypeOfActivitiesConductedTxt | Region Total ExpendituresRegionTotalExpendituresAmt | Specific Services ProvidedSpecificServicesProvidedTxt |
|---|---|---|---|---|---|
| EUROPE (INCLUDING ICELAND & GREENLAND) | 0 | 0 | GRANTMAKING | $19,907 | |
| MIDDLE EAST AND NORTH AFRICA | 0 | 0 | GRANTMAKING | $75,000 | |
| EUROPE (INCLUDING ICELAND & GREENLAND) | 0 | 0 | PROGRAM SERVICE ACTIVITIES | $4,177 | PRECLINICAL RESEARCH STUDIES |
| NORTH AMERICA | 0 | 0 | GRANTMAKING | $20,000 |
| 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 | $119,084 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $119,084 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp (3 entries)
| RegionRegionTxt | Purpose Of GrantPurposeOfGrantTxt | Cash GrantCashGrantAmt | Manner Of Cash DisbursementMannerOfCashDisbursementTxt | Non Cash AssistanceNonCashAssistanceAmt |
|---|---|---|---|---|
| MIDDLE EAST AND NORTH AFRICA | RESEARCH ON TUBEROUS SCLEROSIS COMPLEX | $75,000 | WIRE | $0 |
| EUROPE (INCLUDING ICELAND & GREENLAND) | PROGRAMMATIC SUPPORT | $19,907 | WIRE | $0 |
| NORTH AMERICA | GRANTMAKING | $20,000 | CHECK | $0 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 0 | Total501c3OrgCnt |
| Total Other Org | 3 | TotalOtherOrgCnt |
| Transfer To Foreign Corp | 0 | TransferToForeignCorpInd |
| Interest In Foreign Trust | 0 | InterestInForeignTrustInd |
| Foreign Corp Ownership | 0 | ForeignCorpOwnershipInd |
| Passive Foreign Investmest Co | 0 | PassiveForeignInvestmestCoInd |
| Foreign Partnership | 0 | ForeignPartnershipInd |
| Boycott Countries | 0 | BoycottCountriesInd |
Supplemental Information Detail SupplementalInformationDetail (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 | VIRTUAL WALKS | Event1Nm |
| Gross Receipts Event1 | $806,174 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $650,809 | CharitableContriEvent1Amt |
| Gross Revenue Event1 | $155,365 | GrossRevenueEvent1Amt |
| Non Cash Prizes Event1 | $20,365 | NonCashPrizesEvent1Amt |
| Rent Facility Costs Event1 | $154 | RentFacilityCostsEvent1Amt |
| Event2 | COMEDY FOR A CURE | Event2Nm |
| Gross Receipts Event2 | $142,870 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $100,282 | CharitableContriEvent2Amt |
| Gross Revenue Event2 | $42,588 | GrossRevenueEvent2Amt |
| Non Cash Prizes Event2 | $1,093 | NonCashPrizesEvent2Amt |
| Rent Facility Costs Event2 | $15,891 | RentFacilityCostsEvent2Amt |
| Entertainment Event2 | $1,400 | EntertainmentEvent2Amt |
| Other Events Total | 7 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $240,768 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $204,239 | CharitableContriOtherEventsAmt |
| Gross Revenue Other Events | $36,529 | GrossRevenueOtherEventsAmt |
| Non Cash Prizes Other Events | $2,313 | NonCashPrizesOtherEventsAmt |
| Rent Fclty Costs Other Events | $4,500 | RentFcltyCostsOtherEventsAmt |
| Gross Receipts Total | $1,189,812 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $955,330 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $234,482 | GrossRevenueTotalEventsAmt |
| Non Cash Prizes Total Events | $23,771 | NonCashPrizesTotalEventsAmt |
| Rent Fclty Costs Total Events | $20,545 | RentFcltyCostsTotalEventsAmt |
| Entertainment Total Events | $1,400 | EntertainmentTotalEventsAmt |
| Direct Expense Summary Events | $45,716 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | $188,766 | 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 |
|---|---|---|---|---|---|---|---|---|
| BRIGHAM & WOMEN'S HOSPITAL | ||||||||
| 75 FRANCIS STREET | BOSTON | MA | 02115 | 042312909 | 501(C)(3) | $109,963 | $0 | RESEARCH GRANTS |
| UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER | ||||||||
| 5323 HARRY HINES BLVD | DALLAS | TX | 75287 | 756002868 | 501(C)(3) | $18,750 | $0 | RESEARCH GRANTS |
| NATIONAL ORGANIZATION FOR RARE DISORDERS | ||||||||
| 55 KENOSIA AVENUE | DANBURY | CT | 06810 | 133223946 | 501(C)(3) | $225,000 | $0 | TSC TRAVEL AND LODGING ASSISTANCE PROGRAM |
| NORTHWESTERN UNIVERSITY | ||||||||
| 7TH FLOOR RUBLOFF BUILDING | CHICAGO | IL | 60611 | 362167818 | 501(C)(3) | $56,250 | $0 | RESEARCH GRANTS |
| CHILDREN'S HOSPITAL CORPORATION | ||||||||
| 300 LONGWOOD AVENUE | BOSTON | MA | 02115 | 042774441 | 501(C)(3) | $112,500 | $0 | RESEARCH GRANTS |
| UNIVERSITY OF CALIFORNIA BERKELEY | ||||||||
| 1608 FOURTH ST STE 220 | BERKELEY | CA | 94710 | 946002123 | 501(C)(3) | $28,125 | $0 | RESEARCH GRANT |
| VANDERBILT UNIVERSITY | ||||||||
| 1161 21ST AVE SOUTH | NASHVILLE | TN | 37232 | 352528741 | 501(C)(3) | $28,125 | $0 | RESEARCH GRANT |
| UNIVERSITY OF MARYLAND BALTIMORE | ||||||||
| PO BOX 41428 | BALTIMORE | MD | 21203 | 526002033 | 501(C)(3) | $18,634 | $0 | RESEARCH GRANT |
| UNIVERSITY OF WASHINGTON | ||||||||
| 4333 BROOKLYN AVE NE BOX 359472 | SEATTLE | WA | 98195 | 916001537 | 501(C)(3) | $25,000 | $0 | RESEARCH GRANT |
| CHILDREN'S HOSPITAL MEDICAL CENTER | ||||||||
| 3333 BURNET AVENUE | CINCINNATI | OH | 45229 | 310833936 | 501(C)(3) | $100,000 | $0 | CLINICAL RESEARCH |
| BROWN UNIVERSITY | ||||||||
| 69 BROWN STREET BOX 1911 | PROVIDENCE | RI | 02912 | 050258809 | 501(C)(3) | $55,000 | $0 | CLINICAL RESEARCH |
| BOSTON CHILDREN'S HOSPITAL | ||||||||
| PO BOX 414413 | BOSTON | MA | 022414413 | 042774441 | 501(C)(3) | $57,409 | $0 | CLINICAL RESEARCH |
| 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 $31 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 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. 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 L ROBERDS | ||||||||||||||
| CHIEF SCIENTIFIC OFFICER | $212,421 | $0 | $16,175 | $0 | $258 | $0 | $7,007 | $0 | $24,311 | $0 | $260,172 | $0 | $0 | $0 |
| KARI L ROSBECK | ||||||||||||||
| PRESIDENT & CEO | $196,498 | $3,638 | $17,866 | $331 | $244 | $5 | $6,806 | $0 | $30,738 | $0 | $252,152 | $3,974 | $0 | $0 |
| RICHARD GOLLUB | ||||||||||||||
| CFO | $146,390 | $9,344 | $9,972 | $636 | $372 | $24 | $5,207 | $0 | $32,130 | $0 | $194,071 | $10,004 | $0 | $0 |
| DEAN RAGER-AGUIAR | ||||||||||||||
| DIRECTOR, PRECLINICAL RESEARCH | $157,178 | $0 | $6,379 | $0 | $138 | $0 | $5,180 | $0 | $31,130 | $0 | $200,005 | $0 | $0 | $0 |
Supplemental Information Detail SupplementalInformationDetail (2 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| PART I, LINE 5 | KARI LUTHER ROSBECK, RICHARD GOLLUB, STEVE ROBERDS, DEAN AGUIAR, JAYE ISHAM, LISA MOSS AND APRIL COOPER 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 6 | KARI LUTHER ROSBECK, RICHARD GOLLUB, STEVE ROBERDS, DEAN AGUIAR, JAYE ISHAM, LISA MOSS AND APRIL COOPER ALL HAVE INCENTIVE COMPENSATION EQUAL TO A PERCENTAGE OF THEIR SALARIES BASED ON KEY PERFORMANCE OBJECTIVES AS ESTABLISHED BY THE COMPENSATION COMMITTEE. |
Schedule M IRS990ScheduleM
Books And Publications BooksAndPublicationsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Noncash Contributions Rpt F990 | $34,028 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | FMV | MethodOfDeterminingRevenuesTxt |
Clothing And Household Goods ClothingAndHouseholdGoodsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Noncash Contributions Rpt F990 | $724 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | FMV | MethodOfDeterminingRevenuesTxt |
Securities Publicly Traded SecuritiesPubliclyTradedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Contribution | 7 | ContributionCnt |
| Noncash Contributions Rpt F990 | $250,515 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | FMV | MethodOfDeterminingRevenuesTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form8283 Received | 0 | Form8283ReceivedCnt |
| Any Property That Must Be Held | 0 | AnyPropertyThatMustBeHeldInd |
| Review Process Unusual NC Gifts | Yes (1) | ReviewProcessUnusualNCGiftsInd |
| Third Parties Used | 0 | ThirdPartiesUsedInd |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, COLUMN (B): | FormAndLineReferenceDesc |
| Explanation | REPORTING THE NUMBER OF CONTRIBUTIONS | ExplanationTxt |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (8 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART III, LINE 4A | 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. AN ANNUAL FACE-TO-FACE MEMBERS MEETING IS TYPICALLY HELD EACH YEAR IN APRIL 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. AS OF DECEMBER 2021, 10 COMPANIES WERE ACTIVE MEMBERS OF THE CONSORTIUM. THE CONSORTIUM HAS HAD 17 COMPANY MEMBERS SINCE 2016. THERE IS NATURAL TURNOVER OF INDUSTRY MEMBERSHIP, PRINCIPALLY DRIVEN BY RESEARCH DATA GENERATED BY TESTING THEIR DRUGS. DUE TO INTELLECTUAL PROPERTY CONSIDERATIONS, MOST COMPANIES FULLY FUND THEIR STUDIES THROUGH THE TSC ALLIANCE, WHICH ALLOWS THE COMPANY TO KEEP ITS DATA CONFIDENTIAL. THESE CONFIDENTIAL STUDIES ALSO INCUR A 10% OVERHEAD PAID BY THE COMPANY, WHICH IS A SOURCE OF REVENUE FOR THE TSC ALLIANCE. SINCE INCEPTION, THE CONSORTIUM HAS HELPED ADVANCE THE EVALUATION OF DRUGS FOR TSC BY CONDUCTING 90 STUDIES, EVALUATING 57 CANDIDATE DRUGS. IN 2020, THE TSC PRECLINICAL CONSORTIUM EVALUATED 9 CANDIDATE COMPOUNDS AND CONDUCTED 22 EXPERIMENTS. IN 2012, THE TSC ALLIANCE HELPED CREATE THE TSC CLINICAL RESEARCH CONSORTIUM IN PARTNERSHIP WITH INVESTIGATORS RUNNING CLINICAL STUDIES TO ENSURE CLINICAL RESEARCH IN TSC IS AS EFFICIENT AND EFFECTIVE AS POSSIBLE. SINCE THEN, TSC CLINICAL RESEARCH CONSORTIUM INVESTIGATORS HAVE BEEN AWARDED MORE THAN $39 MILLION BY THE NATIONAL INSTITUTES OF HEALTH (NIH) AND FOOD AND DRUG ADMINISTRATION (FDA) THROUGH COMPETITIVE GRANT PROCESSES. TSC ALLIANCE PERSONNEL SERVE ON THE LEADERSHIP TEAM FOR THE CONSORTIUM, ACTIVELY TRACK ENROLLMENT, AND RAISE COMMUNITY AWARENESS TO HELP IDENTIFY POTENTIAL PARTICIPANTS FOR CLINICAL STUDIES. TSC ALLIANCE ALSO PROVIDES SUPPLEMENTAL FINANCIAL SUPPORT TO ACCELERATE OR EXPAND NIH-FUNDED STUDIES. THE PREVENT TRIAL - PREVENTING EPILEPSY USING VIGABATRIN IN INFANTS WITH TSC - IS THE FIRST PREVENTATIVE TRIAL IN THE UNITED STATES FOR ANY FORM OF EPILEPSY AND HAS COMPLETED ENROLLMENT OF 86 PARTICIPANTS. WE EXPECT THE FIRST RESULTS IN THE FIRST QUARTER OF 2022 AND FINAL RESULTS IN EARLY 2023. THIS TRIAL BUILDS DIRECTLY UPON THE CLINICAL RESEARCH CONSORTIUM'S FIRST CLINICAL STUDY, WHICH IDENTIFIED SPECIFIC EEG CHANGES IN INFANTS WITH TSC PRIOR TO THE ONSET OF SEIZURES. IN THE PREVENT TRIAL, INFANTS WITH TSC RECEIVE REGULAR EEG MONITORING, AND THOSE WHO DEVELOP EEG ABNORMALITIES ARE PLACED ON EITHER VIGABATRIN OR PLACEBO. ANY INFANT WHO SUBSEQUENTLY DEVELOPS CLINICAL SEIZURES IS IMMEDIATELY PLACED ON STANDARD TREATMENT. THIS TRIAL WILL DETERMINE WHETHER TREATMENT WITH VIGABATRIN PRIOR TO THE ONSET OF CLINICAL SEIZURES IN TSC IS BENEFICIAL TO CHILDREN'S DEVELOPMENTAL AND NEUROLOGIC OUTCOMES. MORE DETAILS ABOUT THIS STUDY ARE ONLINE AT WWW.CLINICALTRIALS.GOV/CT2/SHOW/NCT02849457. IMMEDIATELY AFTER THE PREVENT TRIAL ENROLLMENT COMPLETED, A SIMILAR CLINICAL TRIAL BEGAN ENROLLING NEWBORNS WITH TSC BEFORE THE ONSET OF SEIZURES TO TEST THE EFFECTS OF SIROLIMUS ON PREVENTING OR DELAYING SEIZURE ONSET. THE STOPPING TSC ONSET AND PROGRESSION 2 (STOP-2) TRIAL ENROLLED FIVE INFANTS AT CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER AS AN INITIAL SAFETY STUDY. THE SECOND STAGE OF THE TRIAL IS NOW CALLED "SIROLIMUS TSC EPILEPSY PREVENTION STUDY (TSC-STEPS) AND THE TSC ALLIANCE HAS CONTRIBUTED $200,000 TO ENABLE THE TRIAL TO BE EXPANDED TO ADDITIONAL SITES ACROSS THE COUNTRY. THE TSC ALLIANCE IS ALSO PROVIDING SUPPLEMENTAL FUNDING AND COLLECTING BLOOD SAMPLES FOR THE DEVELOPMENTAL SYNAPTOPATHIES CONSORTIUM (DSC), AN NIH-FUNDED PROJECT THAT INCLUDES STUDIES OF TSC AND THE RELATED RARE DISORDERS PHELAN-MCDERMID SYNDROME AND PTEN HAMARTOMA SYNDROME. THESE THREE RARE DISEASES SEEM TO AFFECT CERTAIN SHARED PATHWAYS INFLUENCING THE DEVELOPMENT OF BRAIN CONNECTIONS, OR SYNAPSES. RESEARCHERS IN THIS STUDY ARE TRYING TO FIND EARLIER SIGNS OF AUTISM SPECTRUM DISORDER (ASD) AND INTELLECTUAL DISABILITY (ID) TO GAIN A BETTER UNDERSTANDING OF ASD/ID IN INDIVIDUALS WITH TSC AND ENABLE EFFECTIVE TREATMENTS AND INTERVENTIONS FOR ASD/ID TO BE FOUND. THE DSC WAS RENEWED IN 2019 FOR A SECOND 5-YEAR FUNDING PERIOD. THE TSC ALLIANCE FUNDS A PORTION OF CLINICAL RESEARCH COORDINATORS' SALARIES AT 5 SITES. IN 2021, THE TSC ALLIANCE AWARDED A TWO-YEAR CLINICAL RESEARCH TSC-DSC FELLOWSHIP TO FELIX CHAN, PHD, AT BROWN UNIVERSITY. IN ADDITION TO SPECIFIC COLLABORATIVE PROJECTS DETAILED ABOVE, THE TSC ALLIANCE STIMULATES COLLABORATION AND INNOVATION THROUGH CONVENING EXPERTS AND STAKEHOLDERS WITHIN AND OUTSIDE THE TSC FIELD. IN 2020, THE TSC ALLIANCE INTRODUCED THE CONCEPT OF AN AD HOC INNOVATION WORKSHOP FOCUSED ON A SPECIFIC RESEARCH GAP OR OPPORTUNITY. THE FIRST INNOVATION WORKSHOP TOPIC WAS NEWBORN SCREENING, HELD USING ZOOM AND POWERNOODLE IN LATE 2020 AND CULMINATING IN A ZOOM MEETING ON JANUARY 29, 2021. PARTICIPANTS INCLUDED 20 RESEARCHERS WITH TSC EXPERTISE; 19 RESEARCHERS WITH NEWBORN SCREENING EXPERIENCE FROM CDC, NIH, AND ACADEMIC LABORATORIES; AND FIVE REPRESENTATIVES OF NON-TSC ADVOCACY ORGANIZATIONS WITH NEWBORN SCREENING EXPERIENCE. FOLLOWING PEER-REVIEW BY EXPERTS IN TSC AND SCREENING RESEARCH, THE TSC ALLIANCE FULLY FUNDED TWO PROPOSALS TOTALING $164,856 FOR HYPOTHESIS-DRIVEN RESEARCH IN ASSAY DEVELOPMENT FOR EARLY DETECTION OF TSC. THE 2021 VIRTUAL INTERNATIONAL TSC & LAM RESEARCH CONFERENCE: DRIVING DISCOVERIES BEYOND BOUNDARIES HELD OCTOBER 28-30, 2021, WELCOMED 179 PEOPLE FROM 18 COUNTRIES. CO-SPONSORED BY THE TSC ALLIANCE AND THE LAM FOUNDATION, THE CONFERENCE FEATURED THREE PLENARY SESSIONS WITH 17 ORAL PRESENTATIONS AND TWO POSTER SESSIONS WITH 14 POSTERS. ADDITIONALLY, TWO HALF-DAY SESSIONS OF "TOPIC-BASED DISCUSSION" BROUGHT TOGETHER CLINICAL AND BASIC SCIENCE RESEARCHERS TO DISCUSS CROSS-CUTTING TOPICS, INCLUDING BIG DATA AND CLINICAL TRANSLATION. |
| FORM 990, PART VI | 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 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 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 2021: BOARD MEMBER MUSTAFA SAHIN, PH.D., M.D., IS EMPLOYED AT BOSTON CHILDREN'S HOSPITAL, WHICH RECEIVED $113,659 IN GRANTS AND $9,015 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 A $100,000 GRANT PAYMENT FOR HIS WORK ON STOP-2 AND $8,190 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 $7,715 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 A $18,634 GRANT PAYMENT. |
| 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. |
Schedule R IRS990ScheduleR
Id Related Tax Exempt Org IdRelatedTaxExemptOrgGrp
Disregarded Entity Name DisregardedEntityName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | TSC ALLIANCE ENDOWMENT FUND INC | BusinessNameLine1Txt |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 8737 COLESVILLE ROAD NO 400 | AddressLine1Txt |
| City | SILVER SPRING | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 20910 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 521926919 | EIN |
| Primary Activities | SUPPORT THE MISSION OF THE TSC ALLIANCE | PrimaryActivitiesTxt |
| Legal Domicile State | MD | LegalDomicileStateCd |
| Exempt Code Section | 501(C)(3) | ExemptCodeSectionTxt |
| Public Charity Status | LINE 12B, II | PublicCharityStatusTxt |
| Direct Controlling NA | N/A | DirectControllingNACd |
| Controlled Organization | 0 | ControlledOrganizationInd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Receipt Of Int Annts Rnts Rylts | 0 | ReceiptOfIntAnntsRntsRyltsInd |
| Gift Grnt Or Cap Contri To Oth Org | 0 | GiftGrntOrCapContriToOthOrgInd |
| Gift Grnt Cap Contri From Oth Org | Yes (1) | GiftGrntCapContriFromOthOrgInd |
| Loans Or Guarantees To Other Org | 0 | LoansOrGuaranteesToOtherOrgInd |
| Loans Or Guarantees From Oth Org | 0 | LoansOrGuaranteesFromOthOrgInd |
| Div Related Organization | 0 | DivRelatedOrganizationInd |
| Asset Sale To Other Org | 0 | AssetSaleToOtherOrgInd |
| Asset Purchase From Other Org | 0 | AssetPurchaseFromOtherOrgInd |
| Asset Exchange | 0 | AssetExchangeInd |
| Rental Of Facilities To Oth Org | 0 | RentalOfFacilitiesToOthOrgInd |
| Rental Of Fclts From Oth Org | 0 | RentalOfFcltsFromOthOrgInd |
| Perform Of Services For Oth Org | 0 | PerformOfServicesForOthOrgInd |
| Perform Of Services By Other Org | 0 | PerformOfServicesByOtherOrgInd |
| Sharing Of Facilities | Yes (1) | SharingOfFacilitiesInd |
| Paid Employees Sharing | Yes (1) | PaidEmployeesSharingInd |
| Reimbursement Paid To Other Org | 0 | ReimbursementPaidToOtherOrgInd |
| Reimbursement Paid By Other Org | 0 | ReimbursementPaidByOtherOrgInd |
| Transfer To Other Org | 0 | TransferToOtherOrgInd |
| Transfer From Other Org | 0 | TransferFromOtherOrgInd |
Transactions Related Org TransactionsRelatedOrgGrp
Other Organization Name OtherOrganizationName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | TSC ALLIANCE ENDOWMENT FUND INC | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Transaction Type | C | TransactionTypeTxt |
| Involved | $226,000 | InvolvedAmt |
| Method Of Amount Determination | CASH | MethodOfAmountDeterminationTxt |
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