NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC: Form 990, tax year 2018
View the entire original 990 at ProPublica ↗
- Organization
- NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC (EIN 95-3018799)
- Tax period
- 2018-01-01 to 2018-12-31
- Filed
- 2019-04-05
- IRS object ID
- 201930959349300318
- Schema version
- 2018v3.1
- Source
- Download XML · Original 990 at ProPublica
Every field in the e-filed return. Faint text is the IRS element name, for citing.
- Return header
- Form 990
- Schedule A
- Schedule B
- Schedule C
- Schedule D
- Schedule F
- Schedule G
- Schedule I
- Schedule J
- Schedule M
- Schedule O
- Schedule R
Return header ReturnHeader
| Field | Value | IRS element (for citing) |
|---|---|---|
| Return | 2019-04-05T11:44:07-05:00 | ReturnTs |
| Tax Period End | 2018-12-31 | TaxPeriodEndDt |
Preparer Firm PreparerFirmGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Firm EIN | 521855942 | PreparerFirmEIN |
Preparer Firm Name PreparerFirmName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | TATE AND TRYON | 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 | 2018-01-01 | 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 |
| Business Name Line2 | INC | BusinessNameLine2Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Control | NATI | BusinessNameControlTxt |
| Phone | 3015629890 | PhoneNum |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 801 ROEDER ROAD NO 750 | 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 | 2019-04-05 | SignatureDt |
| Discuss With Paid Preparer | Yes (1) | DiscussWithPaidPreparerInd |
Preparer Person PreparerPersonGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Preparer Person | ELIZABETH HELLER | PreparerPersonNm |
| PTIN | P00397829 | PTIN |
| Phone | 2022932200 | PhoneNum |
Filing Security Information FilingSecurityInformation
IP Address IPAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| I Pv4 Address | 216.59.105.130 | IPv4AddressTxt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| IP | 2019-04-05 | IPDt |
| IP Tm | 11:44:02 | IPTm |
| IP Timezone | ED | IPTimezoneCd |
| Filing License Type | P | FilingLicenseTypeCd |
| At Submission Creation Device Id | DA39A3EE5E6B4B0D3255BFEF95601890AFD80709 | AtSubmissionCreationDeviceId |
| At Submission Filing Device Id | 8B6C6DF7A8E3B84B5AE7D1943EC3750B5C691B8F | AtSubmissionFilingDeviceId |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Tax | 2018 | TaxYr |
| Build TS | 2019-02-21 02:37:17Z | BuildTS |
Form 990 IRS990
Doing Business As Name DoingBusinessAsName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | TUBEROUS SCLEROSIS 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 | 801 ROEDER ROAD NO 750 | AddressLine1Txt |
| City | SILVER SPRING | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 20910 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Gross Receipts | $5,666,249 | GrossReceiptsAmt |
| Group Return For Affiliates | 0 | GroupReturnForAffiliatesInd |
| Organization501c3 | Yes (X) | Organization501c3Ind |
| Website Address | WWW.TSALLIANCE.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 | 24 | VotingMembersGoverningBodyCnt |
| Voting Members Independent | 24 | VotingMembersIndependentCnt |
| Total Employee | 23 | TotalEmployeeCnt |
| Total Volunteers | 2947 | TotalVolunteersCnt |
| Total Gross UBI | $0 | TotalGrossUBIAmt |
| Net Unrelated Bus Txbl Incm | $17,094 | NetUnrelatedBusTxblIncmAmt |
| PY Contributions Grants | $3,949,953 | PYContributionsGrantsAmt |
| CY Contributions Grants | $4,105,376 | CYContributionsGrantsAmt |
| PY Program Service Revenue | $824,241 | PYProgramServiceRevenueAmt |
| CY Program Service Revenue | $1,884,102 | CYProgramServiceRevenueAmt |
| PY Investment Income | $10,221 | PYInvestmentIncomeAmt |
| CY Investment Income | $12,198 | CYInvestmentIncomeAmt |
| PY Other Revenue | -$41,611 | PYOtherRevenueAmt |
| CY Other Revenue | -$510,235 | CYOtherRevenueAmt |
| PY Total Revenue | $4,742,804 | PYTotalRevenueAmt |
| CY Total Revenue | $5,491,441 | CYTotalRevenueAmt |
| PY Grants And Similar Paid | $535,454 | PYGrantsAndSimilarPaidAmt |
| CY Grants And Similar Paid | $464,190 | CYGrantsAndSimilarPaidAmt |
| PY Benefits Paid To Members | $0 | PYBenefitsPaidToMembersAmt |
| CY Benefits Paid To Members | $0 | CYBenefitsPaidToMembersAmt |
| PY Salaries Comp Emp Bnft Paid | $1,809,048 | PYSalariesCompEmpBnftPaidAmt |
| CY Salaries Comp Emp Bnft Paid | $2,013,185 | CYSalariesCompEmpBnftPaidAmt |
| PY Total Prof Fndrsng Expns | $0 | PYTotalProfFndrsngExpnsAmt |
| CY Total Prof Fndrsng Expns | $0 | CYTotalProfFndrsngExpnsAmt |
| CY Total Fundraising Expense | $765,251 | CYTotalFundraisingExpenseAmt |
| PY Other Expenses | $2,976,795 | PYOtherExpensesAmt |
| CY Other Expenses | $3,391,158 | CYOtherExpensesAmt |
| PY Total Expenses | $5,321,297 | PYTotalExpensesAmt |
| CY Total Expenses | $5,868,533 | CYTotalExpensesAmt |
| PY Revenues Less Expenses | -$578,493 | PYRevenuesLessExpensesAmt |
| CY Revenues Less Expenses | -$377,092 | CYRevenuesLessExpensesAmt |
| Total Assets BOY | $9,757,301 | TotalAssetsBOYAmt |
| Total Assets EOY | $9,281,566 | TotalAssetsEOYAmt |
| Total Liabilities BOY | $700,521 | TotalLiabilitiesBOYAmt |
| Total Liabilities EOY | $601,878 | TotalLiabilitiesEOYAmt |
| Net Assets Or Fund Balances BOY | $9,056,780 | NetAssetsOrFundBalancesBOYAmt |
| Net Assets Or Fund Balances EOY | $8,679,688 | NetAssetsOrFundBalancesEOYAmt |
| Info In Schedule O Part III | Yes (X) | InfoInScheduleOPartIIIInd |
| Mission | THE NATIONAL TUBEROUS SCLEROSIS ASSOCIATION, INC., D/B/A TUBEROUS SCLEROSIS ALLIANCE, IS DEDICATED TO FINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THOSE AFFECTED. | MissionDesc |
| Significant New Program Srvc | 0 | SignificantNewProgramSrvcInd |
| Significant Change | 0 | SignificantChangeInd |
| Expense | $2,457,381 | ExpenseAmt |
| Grant | $464,190 | GrantAmt |
| Revenue | $1,884,102 | 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 TS ALLIANCE RESEARCH PROGRAM FUNDS RESEARCH FOCUSED ON TSC PROPOSED BY RESEARCHERS AND ALIGNED WITH THE ORGANIZATION'S MISSION. THE TS ALLIANCE 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.THE TS ALLIANCE HAS FUNDED MORE THAN $20.7 MILLION IN RESEARCH GRANTS ON TSC SINCE 1984. THROUGH THE TS ALLIANCE RESEARCH GRANTS PROGRAM, APPLICATIONS CAN BE SUBMITTED FOR POSTDOCTORAL FELLOWSHIPS AND RESEARCH GRANTS. GRANTS ARE REVIEWED IN A THREE-STEP PROCESS: (1) ALL GRANT APPLICATIONS ARE REVIEWED BY A COMMITTEE COMPRISED OF SCIENTISTS KNOWLEDGEABLE ABOUT THE TOPIC AREA FOR SCIENTIFIC MERIT AND OF ADULTS OR PARENTS 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 TS 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. A TOTAL OF 12 RESEARCH AWARDS WERE FUNDED DURING 2018. THE BOARD OF DIRECTORS APPROVED FUNDING TO BEGIN IN 2018 FOR FOUR MAJOR RESEARCH PROJECTS: (1) DR. YOU FENG (BRIGHAM AND WOMEN'S HOSPITAL) TO STUDY DYSREGULATED PHOSPHATIDYLCHOLINE METABOLISM IN TSC AND LAM PATHOGENESIS AND THERAPY; (2) DR. CHRISTINE OCHOA ESCAMILLA (UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL SCHOOL) FOR A POSTDOCTORAL FELLOWSHIP TO STUDY NEURAL CIRCUITS UNDERLYING AUTISM-RELATED BEHAVIORS IN TSC; (3) DR. ANGELIQUE BORDEY (YALE UNIVERSITY) TO STUDY NON-CELL AUTONOMOUS EFFECTS IN TSC BRAIN MALFORMATIONS; AND (4) DR. ALAN DOMBKOWSKI (WAYNE STATE UNIVERSITY) TO STUDY THE ROLE OF EXOSOMES IN EPILEPSY OF TSC. THE TS ALLIANCE ALSO FUNDED FOUR SEED GRANTS IN RESPONSE TO A CALL FOR PROPOSALS TO UTILIZE BIOSAMPLES AND DATA IN THE TSC BIOSAMPLE REPSOITORY AND NATURAL HISTORY DATABASE: (1) DR. LAURA FARACH (UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT HOUSTON) FOR DEVELOPING A GENETIC RISK PREDICTION MODEL FOR EPILEPSY IN PATIENTS WITH TSC; (2) DR. HILAIRE LAM (BRIGHAM AND WOMEN'S HOSPITAL) TO STUDY MITOCHONDRIAL DNA HETEROPLASMY IN THE PATHOGENESIS AND THERAPY OF TSC; (3) DR. JOANA MARQUES (UNIVERSITY OF PORTO FACULTY OF MEDICINE) TO STUDY EPIGENETIC AND TRANSCRIPTIONAL ANALYSIS OF TSC2 IN LEUKOCYTE DNA FROM TSC PATIENTS; AND (4) DR. JANE YU (UNIVERSITY OF CINCINNATI) FOR QUANTIFICATION OF PLASMA LEVELS OF SPHINGOLIPIDS AND CERAMIDES IN PATIENTS WITH TSC. ALSO IN 2018, WE CONTINUED TO SUPPORT FOUR RESEARCH GRANTS AWARDED IN PREVIOUS YEARS: (1) DR. HENG-JIA LIU (BRIGHAM AND WOMEN'S HOSPITAL) FOR A POSTDOCTORAL FELLOWSHIP TO STUDY T-CELL DYSFUNCTION IN TSC; (2) DR. PETER TSAI (UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER) TO STUDY THE IMPACT OF CEREBELLAR-MEDIAL PREFRONTAL CORTICAL CIRCUITS IN TSC; (3) DR. BRENDAN MANNING (HARVARD SCHOOL OF PUBLIC HEALTH) TO STUDY THE REPURPOSING OF INHIBITORS OF PURINE SYNTHESIS FOR TSC TREATMENT; AND (4) DRS. MARK THOMAS AND ROSEMARY EKONG (UNIVERSITY COLLEGE LONDON) TO CURATE ADDITIONAL MUTATIONS IN TSC1 AND TSC2 GENES AND MAKE THEM OPENLY AVAILABLE TO THE PUBLIC IN A DATABASE THAT IS HIGHLY UTILIZED BY GENETIC RESEARCHERS IN TSC.IMPLEMENTED IN 2006, THE TSC NATURAL HISTORY DATABASE CAPTURES CLINICAL DATA TO DOCUMENT THE IMPACT OF THE DISEASE ON A PERSON'S HEALTH OVER THEIR LIFETIME. AS OF DECEMBER 2018, 2,179 PEOPLE WITH TSC WERE ENROLLED IN THE PROJECT FROM AMONG 18 U.S.-BASED SITES. THE TS ALLIANCE PROVIDES FUNDING TO PARTICIPATING CLINICS TO PERFORM DATA ENTRY, MONITORS THE INTEGRITY OF THE DATABASE, AND MAKES DATA AVAILABLE TO INVESTIGATORS TO ANSWER SPECIFIC RESEARCH QUESTIONS AND IDENTIFY POTENTIAL PARTICIPANTS FOR CLINICAL TRIALS AND STUDIES. IN 2018, THE TS ALLIANCE INVESTED $170,893 IN THE TSC NATURAL HISTORY DATABASE, INCLUDING SUB-PROJECTS ON TAND, EPILEPSY, RENAL ANGIOMYOLIPOMAS, AND SUBEPYNDYMAL GIANT CELL ASTROCYTOMAS TO ADDRESS DETAILED QUESTIONS ABOUT THESE LIFE-THREATENING MANIFESTATIONS OF TSC. A CONTRACT WITH NOVARTIS EXECUTED IN NOVEMBER 2012 PROVIDED TS ALLIANCE WITH FUNDING TO ENHANCE AND GROW THE DEPTH OF DATA IN THE TSC NATURAL HISTORY DATABASE THROUGH 2018.THE TSC BIOSAMPLE REPOSITORY IS A TS ALLIANCE-DIRECTED PROJECT INITIATED IN 2014 THAT WILL IMPACT RESEARCH OVER THE NEXT TEN YEARS OR MORE. HIGH-QUALITY BIOSAMPLES SUCH AS BLOOD, DNA, AND TISSUES LINKED TO DETAILED CLINICAL DATA ARE REQUIRED FOR RESEARCHERS TO UNDERSTAND WHY TSC IS SO DIFFERENT FROM PERSON TO PERSON.THE TS ALLIANCE'S SCIENCE AND MEDICAL COMMITTEE IDENTIFIED THIS AS A GAP THAT CAN ONLY BE FILLED EFFECTIVELY WITH LEADERSHIP OF THE TS ALLIANCE, GUIDED BY A STEERING COMMITTEE OF CLINICIANS AND RESEARCHERS. THE TSC BIOSAMPLE REPOSITORY ENDED 2018 WITH 756 BIOSAMPLES: 524 BLOOD, BUCCAL CELL, OR TISSUE SAMPLES FROM INDIVIDUALS WITH TSC ENROLLED IN THE TSC NATURAL HISTORY DATABASE, AND AN ADDITIONAL 232 SAMPLES FROM THE RARE DISEASE CLINICAL RESEARCH NETWORK'S DEVELOPMENTAL SYNAPTOPATHIES CONSORTIUM AND THE PREVENTING EPILEPSY USING VIGABATRIN IN INFANTS WITH TUBEROUS SCLEROSIS COMPLEX (PREVENT) CLINICAL TRIAL. SAMPLES IN THE REPOSITORY ARE LINKED TO DETAILED CLINICAL DATA IN OUR EXISTING TSC NATURAL HISTORY DATABASE AND ARE AVAILABLE TO QUALIFIED RESEARCHERS WORLDWIDE. SAMPLES ARE HOUSED AT AND DISTRIBUTED FROM THE VAN ANDEL INSTITUTE IN GRAND RAPIDS, MICHIGAN, UNDER CONTROL OF THE TS ALLIANCE. THE TS ALLIANCE LAUNCHED THE TSC PRECLINICAL CONSORTIUM IN 2015, WHICH ENABLES PRIORITIZATION OF CANDIDATE TREATMENTS BASED ON COMPARING HEAD-TO-HEAD DATA USING CONSISTENT ANIMAL MODELS AND RIGOROUS TESTING PROCEDURES. THE TS ALLIANCE IS IDEALLY POSITIONED TO DRIVE THIS COLLABORATION - WITH INPUT FROM ACADEMIC, REGULATORY, AND INDUSTRY STAKEHOLDERS - BY MAINTAINING CONSTANT FOCUS ON THE NEEDS OF PEOPLE WITH TSC. TO DRIVE THIS PROJECT FURTHER IN 2019 AND BEYOND, THE TS ALLIANCE IN NOVEMBER 2018 HIRED DEAN J. AGUIAR, PHD, AS THE DIRECTOR OF PRECLINICAL RESEARCH. DEAN HAS MORE THAN 17 YEARS OF RESEARCH AND DEVELOPMENT (R&D) LEADERSHIP IN BIOPHARMACEUTICAL AND MEDICAL DEVICE INDUSTRIES, LEADING TEAMS AND TECHNOLOGIES FROM DISCOVERY TO INVESTIGATIONAL NEW DRUG (IND) AND INVESTIGATIONAL DEVICE EXEMPTION (IDE), A PRE-REQUISITE FOR CLINICAL TRIAL EVALUATION. THE TS ALLIANCE HAS LICENSES TO USE SPECIFIC TSC MOUSE MODELS FOR EXPERIMENTS CARRIED OUT BY THE PRECLINICAL CONSORTIUM, AND ALL MOUSE LICENSE AGREEMENTS INCLUDE THE RIGHTS FOR THE TS ALLIANCE TO PERFORM EXPERIMENTS UNDER CONTRACT FOR COMMERCIAL ENTITIES. THIS ENSURES DATA GENERATED BY THE PRECLINICAL CONSORTIUM CAN BE USED TO ACCELERATE THE DEVELOPMENT OF NEW TREATMENTS BY COMMERCIAL ENTITIES AS WELL AS ACADEMIC INVESTIGATORS. THE CONSORTIUM BEGAN RUNNING EPILEPSY EXPERIMENTS IN AUGUST 2016 AT PSYCHOGENICS, A CONTRACT RESEARCH ORGANIZATION. TUMOR EXPERIMENTS BEGAN IN AUGUST 2017 AT PORSOLT, ANOTHER CONTRACT RESEARCH ORGANIZATION. THREE PHARMACEUTICAL COMPANIES JOINED THE PRECLINICAL CONSORTIUM IN 2018, BRINGING THE TOTAL SINCE INCEPTION TO NINE INDUSTRY PARTNERS, SEVEN OF WHOM REMAIN ACTIVE MEMBERS. THE TSC PRECLINICAL RESEARCH CONSORTIUM RAN 12 STUDIES TO TEST 10 COMPOUNDS IN 2018, COMPARED TO 10 STUDIES AND 8 COMPOUNDS IN 2017. SOME OF THE CONSORTIUM'S RESULTS WERE SHARED BY PIQUR AT THE EPILEPSY PIPELINE CONFERENCE AND BY DR. ANGELIQUE BORDEY AT THE AMERICAN EPILEPSY SOCIETY ANNUAL MEETING. THIS DESCRIPTION IS CONTINUED ON LINE 4D. | Desc |
Prog Srvc Accom Acty2 ProgSrvcAccomActy2Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $1,537,888 | ExpenseAmt |
| 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 2018 THE TS ALLIANCE FACILITATED 24,852 PEER-TO-PEER SUPPORTS FROM ADULT REGIONAL COORDINATORS, CLINIC AMBASSADORS, DEPENDENT ADULT TRANSITION RESOURCE COORDINATORS, EDUCATION PARENT MENTORS, AND COMMUNITY ALLIANCES THROUGH THE TSC CONNECT PROGRAM.THE SUPPORT SERVICES DEPARTMENT ALSO PROVIDED DIRECT SUPPORT AND RESOURCES TO 4,083 INDIVIDUALS AND FAMILIES DEALING WITH TSC THROUGHOUT 2018. THE VICE PRESIDENT, SUPPORT SERVICES AND EDUCATION PARENT MENTORS ATTENDED 83 SCHOOL MEETINGS (IEPS, EVALUATION TEAM MEETINGS, 504 PLAN MEETINGS, RESOLUTION MEETINGS, AND MEDIATIONS) IN PERSON, THROUGH SKYPE/ FACETIME, AND VIA CONFERENCE CALLS TO SUPPORT FAMILIES IN ATTAINING EDUCATIONAL SERVICES FOR THEIR CHILDREN THROUGHOUT THE COUNTRY. THROUGH COLLABORATIONS WITH THE PARENT TRAINING AND INFORMATION CENTERS IN 2018, 4,473 FREE PARENT TRAININGS/WEBINARS ON EDUCATIONAL ADVOCACY WERE OFFERED TO FAMILIES IN 36 STATES DEALING WITH EDUCATIONAL ISSUES FOR THEIR CHILDREN. IN ADDITION, 110 SCHOOL SYSTEMS WERE OFFERED THE SUPPORT OF THE EDUCATOR MENTOR PROGRAM IN 2018. THERE WERE 12 SCHOOL SYSTEMS PROVIDED TRAINING ON "TSC 101" FOR SCHOOL DISTRICTS IN AN EFFORT TO HELP THEM UNDERSTAND THE COMPLEXITIES OF TSC AND LEARNING. THROUGH A NETWORK OF 37 VOLUNTEER BRANCHES OF THE ORGANIZATION, CALLED COMMUNITY ALLIANCES, LOCAL EDUCATION AND SUPPORT GROUP MEETINGS WERE HELD THROUGHOUT THE COUNTRY EDUCATING AND SUPPORTING 1,500 FAMILIES/INDIVIDUALS LIVING WITH TSC. THE COMMUNITY PROGRAMS TEAM WAS DEVELOPED IN 2018 WHEN THE COMMUNITY ALLIANCES WERE DIVIDED INTO THREE REGIONS, WITH A COMMUNITY PROGRAMS MANAGER ASSIGNED TO EACH REGION TO MANAGE THE DAY-TO-DAY ACTIVITIES WITHIN THEIR COMMUNITIES. IN 2018, 16 OF 75 LEADERSHIP POSITIONS (37 COMMUNITY ALLIANCE CHAIRS AND 38 WALK CHAIRS) WERE FILLED, AND THREE REMAINED OPEN AS OF DECEMBER 31, 2018. THE 2018 WORLD TSC CONFERENCE WAS CO-HOSTED BY THE TS ALLIANCE AND TUBEROUS SCLEROSIS COMPLEX INTERNATIONAL IN DALLAS, TEXAS FROM JULY 26-29, 2018. THIS EVENT DREW 933 TOTAL ATTENDEES FROM 26 COUNTRIES. NINETY-NINE SCHOLARSHIPS WERE AWARDED TO ASSIST FAMILIES/INDVIDUALS WITH THE COST. THE SUCCESS OF THIS EVENT IS DO TO BOTH THE IN-PERSON AND ONLINE PARTICIPATION. THE CONFERENCE CONSISTED OF FOUR EDUCATIONAL TRACKS: PEDIATRIC, TRANSITION, ADULT, AND SPECIALTY. IN ADDITION, THERE WERE CONCURRENTLY RUN GROUP SESSIONS (4) AND MEET-THE-EXPERT SESSIONS (2). GROUP SESSIONS PROVIDED A CONVERSATIONAL FORUM TO DISCUSS TOPICS RELEVANT TO A SMALLER POPULATION OF THOSE AFFECTED BY TSC (E.G.: WOMEN'S HEALTH ISSUES). MEET-THE-EXPERT SESSIONS PROVIDED A QUESTION-AND-ANSWER FORMAT WITH SIX EXPERTS PER SESSION PARTICIPATING FROM VARIOUS SPECIALTIES. GENERAL SESSIONS TOPICS WERE SELECTED BASED ON HOT TOPICS THAT ARE APPLICABLE TO THE MAJORITY OF TSC INDIVIDUALS AND FAMILIES AND INTERNATIONAL RELEVANCE. GLOBAL OUTREACH WORKS TO ADDRESS UNMET NEEDS WITHIN THE GLOBAL TSC COMMUNITY. THE PROGRAM PROVIDES THE OPPORTUNITY FOR THE TS ALLIANCE TO SHARE EXPERIENCES AND ASSIST IN THE START-UP OF SUPPORT OF TSC-RELATED ORGANIZATIONS IN OTHER COUNTRIES. A GLOBAL ALLIANCE IS A STRUCTURED GROUP OF EMPOWERED AND CARING VOLUNTEERS WHO WORK CLOSELY WITH THE TS ALLIANCE TO FACILITATE LOCAL CONNECTIONS FOR INDIVIDUALS AND FAMILIES AFFECTED BY TSC, AND RAISE REVENUE AND AWARENESS WHILE SUPPORTING THE MISSION OF THE ORGANIZATION. IN 2018, THE TS ALLIANCE SIGNED A GLOBAL AGREEMENT WITH THE TS ALLIANCE OF INDIA. THE TS ALLIANCE NOW HAS SIX GLOBAL PARTNERSHIPS, INCLUDING: TS ALLIANCE OF ISRAEL, TS CANADA ST, TS ALLIANCE OF MEXICO, TS ALLIANCE FOUNDATION (IN THAILAND), HUNGARIAN FOUNDATION FOR TUBEROUS SCLEROSIS, AND TS ALLIANCE OF INDIA. | Desc |
Prog Srvc Accom Acty3 ProgSrvcAccomActy3Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Expense | $322,973 | ExpenseAmt |
| 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. DURING 2018, THE TS ALLIANCE PRODUCED TWO ISSUES OF ITS NATIONAL MAGAZINE, PERSPECTIVE, WHICH IS MAILED TO APPROXIMATELY 14,000 CONSTITUENTS AS WELL AS POSTED ON THE WEBSITE. THE TS ALLIANCE'S WEBSITE INCREASES AWARENESS AND PROVIDES EXTENSIVE EDUCATION THROUGH AN AVERAGE OF MORE THAN 35,000 UNIQUE VISITORS EACH MONTH. THE TS ALLIANCE ALSO RELIES HEAVILY ON SOCIAL MEDIA TO EDUCATE CONSTITUENTS AND PROMOTE NEW RESOURCES AND EVENTS. ITS FACEBOOK GROUP BOASTS MORE THAN 9,200 MEMBERS, WHILE ITS TWITTER AND INSTAGRAM ACCOUNTS HAVE 2,000-PLUS AND 1,300-PLUS FOLLOWERS RESPECTIVELY. TO INCREASE PUBLIC AWARENESS, THE TS ALLIANCE ONCE AGAIN PARTICIPATED IN TSC GLOBAL AWARENESS DAY ON MAY 15 AS WELL AS TSC AWARENESS MONTH THOUGHOUT MAY; A TSC GLOBAL AWARENESS DAY NEWS RELEASE GARNERED 15.7 MILLION IMPRESSIONS. THE TS ALLIANCE AGAIN HEAVILY PROMOTED INFANTILE SPASMS AWARENESS WEEK, DECEMBER 1 TO 7. THIS AWARENESS CAMPAIGN INCLUDED TARGETED SOCIAL MEDIA OUTREACH AND A SATELLITE RADIO TOUR, WHICH GAINED COVERAGE REACHING A POTENTIAL OF 1.8 MILLION. ADDITIONAL NEWS RELEASES REACHED ANOTHER 76.1 MILLION. EDUCATIONAL SESSION VIDEOS FROM THE ORGANIZATION'S 2018 WORLD TSC CONFERENCE WERE VIEWED 4,510 TIMES. | Desc |
Prog Srvc Accom Acty Other ProgSrvcAccomActyOtherGrp (3 entries)
| ExpenseExpenseAmt | DescDesc |
|---|---|
| $149,340 | GOVERNMENT RELATIONS FOCUSES ON EDUCATING MEMBERS OF CONGRESS ABOUT TSC TO FURTHER TSC RESEARCH, AWARENESS AND CLINICAL CARE. THE ANNUAL TS ALLIANCE MARCH ON CAPITOL HILL TO ADVOCATE FOR FEDERAL FUNDING FOR THE TUBEROUS SCLEROSIS COMPLEX RESEARCH PROGRAM (TSCRP) AT THE DEPARTMENT OF DEFENSE'S (DOD) CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM (CDMRP) TOOK PLACE IN EARLY MARCH 2018. MORE THAN 100 MEMBERS OF THE TSC COMMUNITY PARTICIPATED AND ASKED THEIR SENATORS AND REPRESENTATIVES TO SIGN ONTO DEAR COLLEAGUE LETTERS IN SUPPORT OF THE TSCRP. MANY OTHER ADVOCATES WHO WERE NOT ABLE TO TRAVEL TO WASHINGTON, DC MET WITH THEIR SENATORS AND REPRESENTATIVES IN THEIR HOME STATES TO MAKE THE CASE FOR CONTINUED FUNDING. IN THE HOUSE, 200 DEMOCRATIC AND REPUBLICAN REPRESENTATIVES SIGNED A BIPARTISAN DEAR COLLEAGUE LETTER OF SUPPORT FROM REPRESENTATIVES DAVE LOEBSACK (D-IA) AND ILEANA ROS-LEHTINEN (R-FL). THE SENATE LETTER WAS SPONSORED BY SENATORS CHRIS MURPHY (D-CT) AND JOHNNY ISAKSON (R-GA) AND ENDED WITH 29 SIGNATURES. IN FY2019, THE TSC RESEARCH PROGRAM AT THE CDMRP RECEIVED A $6 MILLION APPROPRIATION, BRINGING THE CUMULATIVE FUNDING TO $83 MILLION SINCE 2002 AS A RESULT OF OUR SUCCESSFUL GRASSROOTS EFFORTS. 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. |
| $128,621 | PROFESSIONAL EDUCATION EXPANDS PROGRAMS TO TARGET RESEARCHERS AND HEALTHCARE PROVIDERS CARING FOR INDIVIDUALS WITH TSC, MEDICAL STUDENTS, GENETIC COUNSELORS AND EDUCATORS TO MINIMIZE THE CONSEQUENCES OF IGNORANCE AND MISINFORMATION. THE TS ALLIANCE PARTICIPATED IN AND PRESENTED AT 38 PROFESSIONAL MEETINGS INCLUDING: AMERICAN THORACIC SOCIETY AND THE ATS LEADERSHIP SUMMIT; SOCIETY FOR NEUROSCIENCE; GLOBAL GENES; NINDS ANTIEPILEPTOGENESIS AND DISEASE MODIFICATION WORKSHOP; THE EPILEPSY PIPELINE CONFERENCE; TWO HEALTH RESEARCH ALLIANCE MEMBERS MEETINGS; INTERNATIONAL SOCIETY FOR AUTISM RESEARCH; RESEARCH ROUNDTABLE IN EPILEPSY; ASSOCIATION OF CLINICAL RESEARCH PROFESSIONALS; INTERNATIONAL RESEARCH CONFERENCE ON TSC (JAPAN); ICARE (INTERAGENCY COLLABORATIVE TO ADVANCE RESEARCH IN EPILEPSY); NINDS NONPROFIT FORUM; FDA CDER PUBLIC WORKSHOP: DRAFT GUIDANCE RELATING TO PATIENT EXPERIENCE; WORLD ORPHAN DRUG CONGRESS; NORD ORPHAN PRODUCTS AND BREAKTHROUGH SUMMIT; OPEN RESEARCH FUNDERS GROUP; NCATS RARE DISEASES CLINICAL RESEARCH NETWORK (RDCRN) MEETING; PARTNERS AGAINST MORTALITY IN EPILEPSY (PAME); DRUG INFORMATION ASSOCIATION ANNUAL MEETING; BIO INTERNATIONAL CONVENTION; BIO PATIENT HEALTH AND ADVOCACY SUMMIT; THE ARC NATIONAL CONVENTION; INFANTILE SPASMS ACTION NETWORK; AMERICAN ACADEMY OF PEDIATRICS; THE LAM FOUNDATION'S RARE LUNG DISEASES CONFERENCE AND LAMPOSIUM; INTERNATIONAL AUTISM CONFERENCE PATHWAYS TO AN INCLUSIVE LIFE IN MUMBAI, INDIA; 7 REUNION NACIONAL DE ESLEROSIS TUBEROSA; CBI RARE DISEASE INNOVATION SUMMIT; 2018 WORLD TSC CONFERENCE; AND NONPROFIT FUNDER-RESEARCH FORUM. IN ADDITION, AT THE AMERICAN EPILEPSY SOCIETY MEETING THE TS ALLIANCE PRESENTED IN THE DISCOVERY CENTER AND THE POSTER SESSION, AND HOSTED MORE THAN 100 GUESTS AT A RECEPTION FOR TSC RESEARCHERS. AT THE CONFERENCE THE TS ALLIANCE ALSO PARTICIPATED IN A SPECIAL INTEREST GROUP MEETING ON TSC.IN ADDITION, THE VICE PRESIDENT, SUPPORT SERVICES CONTINUES TO COLLABORATE WITH NATIONAL EDUCATIONAL NETWORKS, INCLUDING THE ARC USA, PARENT TRAINING INFORMATION CENTERS ACROSS THE COUNTRY AND THE ASSOCIATION FOR MIDDLE LEVEL EDUCATION. |
| LINE 4A, RESEARCH PROGRAM CONTINUED:THE TS ALLIANCE CONTINUED TO BE A KEY PART OF THE TSC CLINICAL RESEARCH CONSORTIUM ALTHOUGH ONLY A SMALL AMOUNT OF TS ALLIANCE FINANCIAL SUPPORT WAS REQUIRED BECAUSE OF THE CONSORTIUM'S SUCCESS IN OBTAINING NIH FUNDING. HOWEVER, IN 2018 THE TS ALLIANCE CONTINUED ITS FUNDING OF DR. MUSTAFA SAHIN (BOSTON CHILDREN'S HOSPITAL) FOR ADMINISTRATIVE CORE SUPPORT FOR DEVELOPMENTAL SYNAPTOPATHIES ASSOCIATED WITH TSC, PTEN AND SHANK3 MUTATIONS. NOW CONSISTING OF TEN SITES WITH ANOTHER FIVE SITES TO BE ADDED IN EARLY 2019, THE CONSORTIUM HAS RECEIVED $29 MILLION IN COMPETITIVE GRANT FUNDING FROM THE NATIONAL INSTITUTES OF HEALTH (NIH) TO SUPPORT CLINICAL STUDIES IN TSC. THE CLINICAL RESEARCH CONSORTIUM IS MAKING HISTORY WITH THE PREVENT TRIAL - PREVENTING EPILEPSY USING VIGABATRIN IN INFANTS WITH TUBEROUS SCLEROSIS COMPLEX. PREVENT IS THE FIRST PREVENTATIVE TRIAL FOR ANY FORM OF EPILEPSY IN THE US AND EXPECTS TO COMPLETE ENROLLING PARTICIPANTS IN DECEMBER 2019. THE PREVENT TRIAL BUILDS DIRECTLY UPON THE CONSORTIUM'S FIRST CLINICAL STUDY FROM WHICH INTERIM RESULTS HAVE BEEN PUBLISHED (WWW.NCBI.NLM.NIH.GOV/PUBMED/26498039) SHOWING THAT ALL INFANTS WHO DEVELOPED ABNORMAL ACTIVITY ON EEGS WENT ON TO DEVELOP SEIZURES. THIS TRIAL WILL DETERMINE WHETHER TREATMENT WITH VIGABATRIN PRIOR TO THE ONSET OF CLINICAL SEIZURES IN TSC IS BENEFICIAL TO CHILDREN'S DEVELOPMENTAL AND NEUROLOGIC OUTCOMES. THE TS ALLIANCE'S CHIEF SCIENTIFIC OFFICER SERVES ON THE CONSORTIUM'S LEADERSHIP TEAM. |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Other Prog Srvc Expense | $277,961 | TotalOtherProgSrvcExpenseAmt |
| Total Program Service Expenses | $4,596,203 | 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 |
| Temp Or Permanent Endowments | Yes (1) | TempOrPermanentEndowmentsInd |
| 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 With Officer Ent | 0 | BusinessRlnWithOfficerEntInd |
| Deductible Non Cash Contri | Yes (1) | DeductibleNonCashContriInd |
| Deductible Art Contribution | 0 | DeductibleArtContributionInd |
| Terminate Operations | 0 | TerminateOperationsInd |
| Partial Liquidation | 0 | PartialLiquidationInd |
| Disregarded Entity | 0 | DisregardedEntityInd |
| Related Entity | Yes (1) | RelatedEntityInd |
| Related Organization Ctrl Ent | 0 | RelatedOrganizationCtrlEntInd |
| Trnsfr Exmpt Non Chrtbl Rltd Org | 0 | TrnsfrExmptNonChrtblRltdOrgInd |
| Activities Conducted Prtshp | 0 | ActivitiesConductedPrtshpInd |
| Schedule O Required | Yes (1) | ScheduleORequiredInd |
| IRP Document | 35 | IRPDocumentCnt |
| IRP Document W2 G | 0 | IRPDocumentW2GCnt |
| Backup Wthld Compliance | Yes (1) | BackupWthldComplianceInd |
| Employee | 23 | EmployeeCnt |
| Employment Tax Returns Filed | Yes (1) | EmploymentTaxReturnsFiledInd |
| Unrelated Bus Incm Over Limit | Yes (1) | UnrelatedBusIncmOverLimitInd |
| Form990 T Filed | Yes (1) | Form990TFiledInd |
| 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 | 24 | GoverningBodyVotingMembersCnt |
| Independent Voting Member | 24 | 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 | WV | StatesWhereCopyOfReturnIsFldCd |
| States Where Copy Of Return Is Fld | WI | 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 | 801 ROEDER ROAD STE 750 | AddressLine1Txt |
| City | SILVER SPRING | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 20910 | ZIPCd |
Form990 Part VII Section A Form990PartVIISectionAGrp (29 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 |
|---|---|---|---|---|---|---|---|---|---|
| BETH DEAN | |||||||||
| CHAIR | 5.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| CHRIS RUSSELL | |||||||||
| VICE CHAIR | 5.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| TIM DILLS | |||||||||
| IMMEDIATE PAST CHAIR | 5.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| CASSANDRA CARROLL | |||||||||
| SECRETARY | 5.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| JIM MAGINN | |||||||||
| TREASURER | 5.00 | 0.00 | Yes (X) | Yes (X) | $0 | $0 | $0 | ||
| MARTINA BEBIN MD MPA | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| JOHN J BISSLER MD | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| MICHAEL CAGGIANO | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| SARA 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 | |||
| PETER CRINO MD PHD | |||||||||
| 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 | |||
| DAVID FITZMAURICE | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| ROB GRANDIA | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| TOM GWINN | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| DANA HOLINKA | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| LAURA S LUBBERS | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| BRENDAN D MANNING PHD | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| DARREN MILES | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| ADOLFO ORIVE | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| REBECCA ANHANG PRICE | |||||||||
| BOARD MEMBER | 2.00 | 0.00 | Yes (X) | $0 | $0 | $0 | |||
| MATTHEW SIMONIAN | |||||||||
| 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) | $186,994 | $3,463 | $31,736 | |||
| RICHARD A GOLLUB | |||||||||
| CONTROLLER & CFO | 47.00 | 3.00 | Yes (X) | $138,939 | $8,869 | $30,755 | |||
| STEVEN L ROBERDS | |||||||||
| CHIEF SCIENTIFIC OFFICER | 45.00 | 0.00 | $199,841 | $0 | $29,403 | Yes (X) | |||
| JAYE D ISHAM | |||||||||
| VP, COMMUNICATIONS STRATEGY | 45.00 | 0.00 | $109,148 | $0 | $4,510 | Yes (X) | |||
| LISA MOSS | |||||||||
| SR DIRECTOR OF DONOR RELATIONS | 45.00 | 0.00 | $100,873 | $0 | $22,956 | Yes (X) | |||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Reportable Comp From Org | $735,795 | TotalReportableCompFromOrgAmt |
| Tot Reportable Comp Rltd Org | $12,332 | TotReportableCompRltdOrgAmt |
| Total Other Compensation | $119,360 | TotalOtherCompensationAmt |
| Indiv Rcvd Greater Than100 K | 5 | 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 | Address Line1ContractorAddress/ForeignAddress/AddressLine1Txt | CityContractorAddress/ForeignAddress/CityNm | CountryContractorAddress/ForeignAddress/CountryCd | Foreign PostalContractorAddress/ForeignAddress/ForeignPostalCd |
|---|---|---|---|---|---|---|---|---|---|
| PSYCHOGENICS INC | |||||||||
| 20 GRAMERCY PARK SOUTH | NEW YORK | NY | 10003 | RESEARCH LAB SVCS | $782,961 | ||||
| PORSOLT SAS | |||||||||
| RESEARCH LAB SVCS | $122,260 | ZA DE GLATIGNE | LEGENESTSAINTISLE | FR | 53940 | ||||
| CAVAROCCHI RUSCIO DENNIS & ASSOC LLC | |||||||||
| 600 MARYLAND AVE SW STE 835W | WASH | DC | 20024 | GOVERNMENT RELATIONS | $116,914 | ||||
| Field | Value | IRS element (for citing) |
|---|---|---|
| Cntrct Rcvd Greater Than100 K | 3 | CntrctRcvdGreaterThan100KCnt |
| Federated Campaigns | $34,150 | FederatedCampaignsAmt |
| Membership Dues | $8,144 | MembershipDuesAmt |
| Fundraising | $1,558,687 | FundraisingAmt |
| Related Organizations | $50,000 | RelatedOrganizationsAmt |
| All Other Contributions | $2,454,395 | AllOtherContributionsAmt |
| Noncash Contributions | $56,905 | NoncashContributionsAmt |
| Total Contributions | $4,105,376 | TotalContributionsAmt |
Program Service Revenue ProgramServiceRevenueGrp (2 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | Related Or Exempt Func IncomeRelatedOrExemptFuncIncomeAmt | ExclusionExclusionAmt |
|---|---|---|---|---|
| CONTRACT REVENUE | 900099 | $1,126,302 | $1,126,302 | |
| CONFERENCE REVENUE | 900099 | $757,800 | $757,800 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Program Service Revenue | $1,884,102 | TotalProgramServiceRevenueAmt |
Investment Income InvestmentIncomeGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $13,784 | TotalRevenueColumnAmt |
| Exclusion | $13,784 | ExclusionAmt |
Gross Amount Sales Assets GrossAmountSalesAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $47,237 | SecuritiesAmt |
Less Cost Oth Basis Sales Expnss LessCostOthBasisSalesExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | $48,823 | SecuritiesAmt |
Gain Or Loss GainOrLossGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Securities | -$1,586 | SecuritiesAmt |
Net Gain Or Loss Investments NetGainOrLossInvestmentsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$1,586 | TotalRevenueColumnAmt |
| Exclusion | -$1,586 | ExclusionAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Fundraising Gross Income | $76,128 | FundraisingGrossIncomeAmt |
| Contri Rpt Fundraising Event | $1,558,687 | ContriRptFundraisingEventAmt |
| Fundraising Direct Expenses | $125,985 | FundraisingDirectExpensesAmt |
Net Incm From Fundraising Evt NetIncmFromFundraisingEvtGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | -$49,857 | TotalRevenueColumnAmt |
| Exclusion | -$49,857 | ExclusionAmt |
Other Revenue Misc OtherRevenueMiscGrp (2 entries)
| DescDesc | BusinessBusinessCd | Total Revenue ColumnTotalRevenueColumnAmt | ExclusionExclusionAmt |
|---|---|---|---|
| MISCELLANEOUS | 900099 | $1,243 | $1,243 |
| CHANGE INT-ENDOWMENT | 900099 | -$461,621 | -$461,621 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Revenue Total | -$460,378 | OtherRevenueTotalAmt |
Total Revenue TotalRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Revenue Column | $5,491,441 | TotalRevenueColumnAmt |
| Related Or Exempt Func Income | $1,126,302 | RelatedOrExemptFuncIncomeAmt |
| Unrelated Business Revenue | $0 | UnrelatedBusinessRevenueAmt |
| Exclusion | $259,763 | ExclusionAmt |
Grants To Domestic Orgs GrantsToDomesticOrgsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $389,085 | TotalAmt |
| Program Services | $389,085 | ProgramServicesAmt |
Foreign Grants ForeignGrantsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $75,105 | TotalAmt |
| Program Services | $75,105 | ProgramServicesAmt |
Comp Current Ofcr Directors CompCurrentOfcrDirectorsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $647,517 | TotalAmt |
| Program Services | $390,975 | ProgramServicesAmt |
| Management And General | $116,386 | ManagementAndGeneralAmt |
| Fundraising | $140,156 | FundraisingAmt |
Other Salaries And Wages OtherSalariesAndWagesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $1,055,494 | TotalAmt |
| Program Services | $639,990 | ProgramServicesAmt |
| Management And General | $190,359 | ManagementAndGeneralAmt |
| Fundraising | $225,145 | FundraisingAmt |
Pension Plan Contributions PensionPlanContributionsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $30,191 | TotalAmt |
| Program Services | $18,306 | ProgramServicesAmt |
| Management And General | $5,445 | ManagementAndGeneralAmt |
| Fundraising | $6,440 | FundraisingAmt |
Other Employee Benefits OtherEmployeeBenefitsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $163,661 | TotalAmt |
| Program Services | $96,332 | ProgramServicesAmt |
| Management And General | $28,819 | ManagementAndGeneralAmt |
| Fundraising | $38,510 | FundraisingAmt |
Payroll Taxes PayrollTaxesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $116,322 | TotalAmt |
| Program Services | $68,468 | ProgramServicesAmt |
| Management And General | $20,483 | ManagementAndGeneralAmt |
| Fundraising | $27,371 | FundraisingAmt |
Fees For Services Legal FeesForServicesLegalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $36,660 | TotalAmt |
| Program Services | $24,376 | ProgramServicesAmt |
| Management And General | $12,216 | ManagementAndGeneralAmt |
| Fundraising | $68 | FundraisingAmt |
Fees For Services Accounting FeesForServicesAccountingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $19,500 | TotalAmt |
| Management And General | $19,500 | ManagementAndGeneralAmt |
Fees For Services Lobbying FeesForServicesLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $108,084 | TotalAmt |
| Program Services | $108,084 | ProgramServicesAmt |
Fees For Services Other FeesForServicesOtherGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $156,635 | TotalAmt |
| Program Services | $84,446 | ProgramServicesAmt |
| Management And General | $16,062 | ManagementAndGeneralAmt |
| Fundraising | $56,127 | FundraisingAmt |
Office Expenses OfficeExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $284,230 | TotalAmt |
| Program Services | $126,962 | ProgramServicesAmt |
| Management And General | $21,949 | ManagementAndGeneralAmt |
| Fundraising | $135,319 | FundraisingAmt |
Information Technology InformationTechnologyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $181,771 | TotalAmt |
| Program Services | $121,958 | ProgramServicesAmt |
| Management And General | $28,225 | ManagementAndGeneralAmt |
| Fundraising | $31,588 | FundraisingAmt |
Occupancy OccupancyGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $97,207 | TotalAmt |
| Program Services | $57,361 | ProgramServicesAmt |
| Management And General | $16,886 | ManagementAndGeneralAmt |
| Fundraising | $22,960 | FundraisingAmt |
Travel TravelGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $316,693 | TotalAmt |
| Program Services | $281,538 | ProgramServicesAmt |
| Management And General | $4,256 | ManagementAndGeneralAmt |
| Fundraising | $30,899 | FundraisingAmt |
Conferences Meetings ConferencesMeetingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $646,435 | TotalAmt |
| Program Services | $630,084 | ProgramServicesAmt |
| Management And General | $5,900 | ManagementAndGeneralAmt |
| Fundraising | $10,451 | FundraisingAmt |
Depreciation Depletion DepreciationDepletionGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $79,410 | TotalAmt |
| Program Services | $61,394 | ProgramServicesAmt |
| Management And General | $5,234 | ManagementAndGeneralAmt |
| Fundraising | $12,782 | FundraisingAmt |
Insurance InsuranceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $7,917 | TotalAmt |
| Program Services | $4,676 | ProgramServicesAmt |
| Management And General | $1,383 | ManagementAndGeneralAmt |
| Fundraising | $1,858 | FundraisingAmt |
Other Expenses OtherExpensesGrp (4 entries)
| DescDesc | TotalTotalAmt | Program ServicesProgramServicesAmt | Management And GeneralManagementAndGeneralAmt | FundraisingFundraisingAmt |
|---|---|---|---|---|
| PRECLINICAL CONSORTIUM | $1,007,978 | $1,007,978 | ||
| NATURAL HISTORY DATABAS | $170,893 | $170,893 | ||
| BIOSAMPLE REPOSITORY | $164,328 | $164,328 | ||
| DUES AND SUBSCRIPTIONS | $56,969 | $23,021 | $11,632 | $22,316 |
All Other Expenses AllOtherExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $56,448 | TotalAmt |
| Program Services | $50,843 | ProgramServicesAmt |
| Management And General | $2,344 | ManagementAndGeneralAmt |
| Fundraising | $3,261 | FundraisingAmt |
Total Functional Expenses TotalFunctionalExpensesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $5,868,533 | TotalAmt |
| Program Services | $4,596,203 | ProgramServicesAmt |
| Management And General | $507,079 | ManagementAndGeneralAmt |
| Fundraising | $765,251 | FundraisingAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Joint Costs | Yes (X) | JointCostsInd |
Total Joint Costs TotalJointCostsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total | $73,440 | TotalAmt |
| Program Services | $36,720 | ProgramServicesAmt |
| Management And General | $0 | ManagementAndGeneralAmt |
| Fundraising | $36,720 | FundraisingAmt |
Cash Non Interest Bearing CashNonInterestBearingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,079,000 | BOYAmt |
| EOY | $785,107 | EOYAmt |
Savings And Temp Cash Invst SavingsAndTempCashInvstGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $1,231,098 | BOYAmt |
| EOY | $1,469,865 | EOYAmt |
Pledges And Grants Receivable PledgesAndGrantsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $989,299 | BOYAmt |
| EOY | $1,249,706 | EOYAmt |
Accounts Receivable AccountsReceivableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $278,373 | BOYAmt |
| EOY | $158,782 | EOYAmt |
Prepaid Expenses Defrd Charges PrepaidExpensesDefrdChargesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $344,133 | BOYAmt |
| EOY | $263,093 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Land Bldg Equip Cost Or Other Bss | $430,481 | LandBldgEquipCostOrOtherBssAmt |
| Land Bldg Equip Accum Deprec | $261,135 | LandBldgEquipAccumDeprecAmt |
Land Bldg Equip Basis Net LandBldgEquipBasisNetGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $186,001 | BOYAmt |
| EOY | $169,346 | EOYAmt |
Investments Pub Traded Sec InvestmentsPubTradedSecGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $10,970 | BOYAmt |
| EOY | $65 | EOYAmt |
Other Assets Total OtherAssetsTotalGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,638,427 | BOYAmt |
| EOY | $5,185,602 | EOYAmt |
Total Assets TotalAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $9,757,301 | BOYAmt |
| EOY | $9,281,566 | EOYAmt |
Accounts Payable Accr Expnss AccountsPayableAccrExpnssGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $472,644 | BOYAmt |
| EOY | $452,001 | EOYAmt |
Deferred Revenue DeferredRevenueGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $167,293 | BOYAmt |
| EOY | $114,499 | EOYAmt |
Other Liabilities OtherLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $60,584 | BOYAmt |
| EOY | $35,378 | EOYAmt |
Total Liabilities TotalLiabilitiesGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $700,521 | BOYAmt |
| EOY | $601,878 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Organization Follows SFAS117 | Yes (X) | OrganizationFollowsSFAS117Ind |
Unrestricted Net Assets UnrestrictedNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $5,975,949 | BOYAmt |
| EOY | $5,024,877 | EOYAmt |
Temporarily Rstr Net Assets TemporarilyRstrNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $2,201,387 | BOYAmt |
| EOY | $0 | EOYAmt |
Permanently Rstr Net Assets PermanentlyRstrNetAssetsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $879,444 | BOYAmt |
| EOY | $3,654,811 | EOYAmt |
Total Net Assets Fund Balance TotalNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $9,056,780 | BOYAmt |
| EOY | $8,679,688 | EOYAmt |
Tot Liab Net Assets Fund Balance TotLiabNetAssetsFundBalanceGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| BOY | $9,757,301 | BOYAmt |
| EOY | $9,281,566 | EOYAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Reconcilation Revenue Expnss | -$377,092 | 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 | $3,124,386 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $3,514,873 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $4,517,826 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $3,949,953 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $4,105,376 | CurrentTaxYearAmt |
| Total | $19,212,414 | TotalAmt |
Total Calendar Year170 TotalCalendarYear170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $3,124,386 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $3,514,873 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $4,517,826 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $3,949,953 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $4,105,376 | CurrentTaxYearAmt |
| Total | $19,212,414 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Substantial Contributors Tot | $3,185,510 | SubstantialContributorsTotAmt |
| Public Support Total170 | $16,026,904 | PublicSupportTotal170Amt |
Gross Investment Income170 GrossInvestmentIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $13,455 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $16,038 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $15,431 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $10,393 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $13,784 | CurrentTaxYearAmt |
| Total | $69,101 | TotalAmt |
Unrelated Business Net Incm170 UnrelatedBusinessNetIncm170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus2 Years | $44,490 | CurrentTaxYearMinus2YearsAmt |
| Total | $44,490 | TotalAmt |
Other Income170 OtherIncome170Grp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Tax Year Minus4 Years | $9,351 | CurrentTaxYearMinus4YearsAmt |
| Current Tax Year Minus3 Years | $1,401 | CurrentTaxYearMinus3YearsAmt |
| Current Tax Year Minus2 Years | $1,683 | CurrentTaxYearMinus2YearsAmt |
| Current Tax Year Minus1 Year | $642 | CurrentTaxYearMinus1YearAmt |
| Current Tax Year | $1,243 | CurrentTaxYearAmt |
| Total | $14,320 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Support | $19,340,325 | TotalSupportAmt |
| Gross Receipts Rltd Activities | $6,113,224 | GrossReceiptsRltdActivitiesAmt |
| Public Support CY170 | 0.82870 | PublicSupportCY170Pct |
| Public Support PY170 | 0.84540 | 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 - 2014 AMOUNT: $ 9,351. 2015 AMOUNT: $ 1,401. 2016 AMOUNT: $ 1,683. 2017 AMOUNT: $ 642. 2018 AMOUNT: $ 1,243. | ExplanationTxt |
Schedule B IRS990ScheduleB
Schedule C IRS990ScheduleC
Total Grassroots Lobbying TotalGrassrootsLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $823 | FilingOrganizationsTotalAmt |
Total Direct Lobbying TotalDirectLobbyingGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $148,517 | FilingOrganizationsTotalAmt |
Total Lobbying Expend TotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $149,340 | FilingOrganizationsTotalAmt |
Other Exempt Purpose Expend OtherExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $5,861,759 | FilingOrganizationsTotalAmt |
Total Exempt Purpose Expend TotalExemptPurposeExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $6,011,099 | FilingOrganizationsTotalAmt |
Lobbying Nontaxable Amount LobbyingNontaxableAmountGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $450,555 | FilingOrganizationsTotalAmt |
Grassroots Nontaxable GrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Filing Organizations Total | $112,639 | 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 | $364,719 | CurrentYearMinus3Amt |
| Current Year Minus2 | $394,622 | CurrentYearMinus2Amt |
| Current Year Minus1 | $416,065 | CurrentYearMinus1Amt |
| Current Year | $450,555 | CurrentYearAmt |
| Total | $1,625,961 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Lobbying Ceiling | $2,438,942 | LobbyingCeilingAmt |
Avg Total Lobbying Expend AvgTotalLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $126,441 | CurrentYearMinus3Amt |
| Current Year Minus2 | $145,927 | CurrentYearMinus2Amt |
| Current Year Minus1 | $146,199 | CurrentYearMinus1Amt |
| Current Year | $149,340 | CurrentYearAmt |
| Total | $567,907 | TotalAmt |
Avg Grassroots Nontaxable AvgGrassrootsNontaxableGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $91,180 | CurrentYearMinus3Amt |
| Current Year Minus2 | $98,656 | CurrentYearMinus2Amt |
| Current Year Minus1 | $104,016 | CurrentYearMinus1Amt |
| Current Year | $112,639 | CurrentYearAmt |
| Total | $406,491 | TotalAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grassroots Ceiling | $609,737 | GrassrootsCeilingAmt |
Avg Grassroots Lobbying Expend AvgGrassrootsLobbyingExpendGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Current Year Minus3 | $5,047 | CurrentYearMinus3Amt |
| Current Year Minus2 | $986 | CurrentYearMinus2Amt |
| Current Year Minus1 | $1,797 | CurrentYearMinus1Amt |
| Current Year | $823 | CurrentYearAmt |
| Total | $8,653 | TotalAmt |
Schedule D IRS990ScheduleD
CY Endwmt Fund CYEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $5,655,555 | BeginningYearBalanceAmt |
| Investment Earnings Or Losses | -$439,321 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $50,000 | OtherExpendituresAmt |
| Administrative Expenses | $54,646 | AdministrativeExpensesAmt |
| End Year Balance | $5,111,588 | EndYearBalanceAmt |
CY Minus1 Yr Endwmt Fund CYMinus1YrEndwmtFundGrp
| 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 |
CY Minus2 Yr Endwmt Fund CYMinus2YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $4,763,517 | BeginningYearBalanceAmt |
| Contributions | $58,749 | ContributionsAmt |
| Investment Earnings Or Losses | $525,868 | InvestmentEarningsOrLossesAmt |
| Administrative Expenses | $54,145 | AdministrativeExpensesAmt |
| End Year Balance | $5,293,989 | EndYearBalanceAmt |
CY Minus3 Yr Endwmt Fund CYMinus3YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $5,061,299 | BeginningYearBalanceAmt |
| Contributions | $29,940 | ContributionsAmt |
| Investment Earnings Or Losses | $93,294 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $202,000 | OtherExpendituresAmt |
| Administrative Expenses | $32,428 | AdministrativeExpensesAmt |
| End Year Balance | $4,950,105 | EndYearBalanceAmt |
CY Minus4 Yr Endwmt Fund CYMinus4YrEndwmtFundGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Beginning Year Balance | $4,994,766 | BeginningYearBalanceAmt |
| Contributions | $47,153 | ContributionsAmt |
| Investment Earnings Or Losses | $179,553 | InvestmentEarningsOrLossesAmt |
| Other Expenditures | $97,500 | OtherExpendituresAmt |
| Administrative Expenses | $62,673 | AdministrativeExpensesAmt |
| End Year Balance | $5,061,299 | EndYearBalanceAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Board Designated Balance EOY | 0.84340 | BoardDesignatedBalanceEOYPct |
| Prmnnt Endowment Balance EOY | 0.15660 | PrmnntEndowmentBalanceEOYPct |
| 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 | $156,545 | OtherCostOrOtherBasisAmt |
| Depreciation | $128,781 | DepreciationAmt |
| Book Value | $27,764 | BookValueAmt |
Equipment EquipmentGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $155,880 | OtherCostOrOtherBasisAmt |
| Depreciation | $54,742 | DepreciationAmt |
| Book Value | $101,138 | BookValueAmt |
Other Land Buildings OtherLandBuildingsGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Other Cost Or Other Basis | $118,056 | OtherCostOrOtherBasisAmt |
| Depreciation | $77,612 | DepreciationAmt |
| Book Value | $40,444 | BookValueAmt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Land Buildings | $169,346 | TotalBookValueLandBuildingsAmt |
Other Assets Org OtherAssetsOrgGrp (2 entries)
| DescDesc | Book ValueBookValueAmt |
|---|---|
| INTEREST IN NET ASSETS OF AFFI | $5,193,934 |
| DUE FROM AFFILIATE | -$8,332 |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Book Value Other Assets | $5,185,602 | TotalBookValueOtherAssetsAmt |
Other Liabilities Org OtherLiabilitiesOrgGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Desc | DEFERRED RENT & LEASE INCENTIVE | Desc |
| Amt | $35,378 | Amt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total Liability | $35,378 | TotalLiabilityAmt |
| Total Rev Etc Audited Fincl Stmt | $5,507,752 | TotalRevEtcAuditedFinclStmtAmt |
| Donated Services And Use Fclts | $16,311 | DonatedServicesAndUseFcltsAmt |
| Revenue Not Reported | $16,311 | RevenueNotReportedAmt |
| Revenue Subtotal | $5,491,441 | RevenueSubtotalAmt |
| Revenue Not Reported Fincl Stmt | $0 | RevenueNotReportedFinclStmtAmt |
| Total Revenue Per Form990 | $5,491,441 | TotalRevenuePerForm990Amt |
| Tot Expns Etc Audited Fincl Stmt | $5,884,844 | TotExpnsEtcAuditedFinclStmtAmt |
| Donated Services Use Fclts | $16,311 | DonatedServicesUseFcltsAmt |
| Expenses Not Reported | $16,311 | ExpensesNotReportedAmt |
| Expenses Subtotal | $5,868,533 | ExpensesSubtotalAmt |
| Expenses Not Rpt Fincl Stmt | $0 | ExpensesNotRptFinclStmtAmt |
| Total Expenses Per Form990 | $5,868,533 | TotalExpensesPerForm990Amt |
Supplemental Information Detail SupplementalInformationDetail (2 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| PART V, LINE 4: | THE ALLIANCE'S ENDOWMENTS CONSIST OF TWO FUNDS ESTABLISHED FOR DIFFERENT PURPOSES. THE ALLIANCE'S ENDOWMENT INCLUDE ONE TRADITIONAL DONOR-RESTRICTED ENDOWMENT FUNDS AND ONE BOARD-DESIGNATED ENDOWMENT FUND. THE BOARD-DESIGNATED ENDOWMENT FUND SOLELY CONSISTS OF THE ENDOWMENT FUND'S UNRESTRICTED NET ASSET BALANCE. |
| PART V, LINE 1C: | VOLATILITY OF THE FINANCIAL MARKETS IN 2018 NEGATIVELY IMPACTED THE MARKET VALUE OF MUTUAL FUND INVESTMENTS HELD BY THE TUBEROUS SCLEROSIS ALLIANCE ENDOWMENT FUND (A SEPARATE SUPPORTING ORGANIZATION TO THE NATIONAL TUBEROUS SCLEROSIS ASSOC., INC.). INCLUDED IN THE ($439,321) OF NET INVESTMENT LOSSES ARE ($631,105) OF UNREALIZED LOSSES ON SECURITIES HELD BY THE ENDOWMENT FUND. |
Schedule F IRS990ScheduleF
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Account Activities Outside US AccountActivitiesOutsideUSGrp (3 entries)
| RegionRegionTxt | OfficesOfficesCnt | EmployeeEmployeeCnt | Type Of Activities ConductedTypeOfActivitiesConductedTxt | Region Total ExpendituresRegionTotalExpendituresAmt | Specific Services ProvidedSpecificServicesProvidedTxt |
|---|---|---|---|---|---|
| EUROPE (INCLUDING ICELAND & GREENLAND) | 0 | 0 | GRANTMAKING | $73,105 | |
| MIDDLE EAST AND NORTH AFRICA | 0 | 0 | GRANTMAKING | $2,000 | |
| EUROPE (INCLUDING ICELAND & GREENLAND) | 0 | 0 | PROGRAM SERVICE ACTIVITIES | $122,260 | PRECLINICAL RESEARCH STUDIES |
| 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 | $197,365 | SubtotalSpentAmt |
| Continuation Spent | $0 | ContinuationSpentAmt |
| Total Spent | $197,365 | TotalSpentAmt |
Grants To Org Outside US GrantsToOrgOutsideUSGrp (3 entries)
| RegionRegionTxt | Purpose Of GrantPurposeOfGrantTxt | Cash GrantCashGrantAmt | Manner Of Cash DisbursementMannerOfCashDisbursementTxt | Valuation Method UsedValuationMethodUsedDesc |
|---|---|---|---|---|
| EUROPE/ICELAND/GREENLAND | PROGRAMMATIC SUPPORT | $10,000 | WIRE | CASH |
| EUROPE (INCLUDING ICELAND & GREENLAND) | RESEARCH ON TSC | $44,105 | WIRE | CASH |
| EUROPE (INCLUDING ICELAND & GREENLAND) | RESEARCH ON TSC | $19,000 | WIRE | CASH |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 1 | Total501c3OrgCnt |
| Total Other Org | 2 | TotalOtherOrgCnt |
| Transfer To Foreign Corp | 0 | TransferToForeignCorpInd |
| Interest In Foreign Trust | 0 | InterestInForeignTrustInd |
| Foreign Corp Ownership | 0 | ForeignCorpOwnershipInd |
| Passive Foreign Investmest Co | 0 | PassiveForeignInvestmestCoInd |
| Foreign Partnership | 0 | ForeignPartnershipInd |
| Boycott Countries | 0 | BoycottCountriesInd |
Supplemental Information Detail SupplementalInformationDetail
| Field | Value | IRS element (for citing) |
|---|---|---|
| Form And Line Reference | PART I, LINE 2: | FormAndLineReferenceDesc |
| Explanation | GRANTEE ORGANIZATIONS ARE EXPECTED TO FILE ANNUAL PROGRESS REPORTS TO OUTLINED GRANT GOALS AND MILESTONES. THESE REPORTS ARE REVIEWED BY A COMMITTEE OF PEERS. THIS COMMITTEE MAKES DETERMINATIONS BASED ON QUALITY OF WORK TO GOALS AND IF THE GRANTEE WILL CONTINUE TO RECEIVE FUNDING. A FINAL WRITTEN AND FINANCIAL REPORT IS REQUIRED OF ALL GRANTEES. | ExplanationTxt |
Schedule G IRS990ScheduleG
Fundraising Event Information FundraisingEventInformationGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Event1 | WALKS | Event1Nm |
| Gross Receipts Event1 | $940,123 | GrossReceiptsEvent1Amt |
| Charitable Contri Event1 | $880,123 | CharitableContriEvent1Amt |
| Gross Revenue Event1 | $60,000 | GrossRevenueEvent1Amt |
| Non Cash Prizes Event1 | $41,943 | NonCashPrizesEvent1Amt |
| Rent Facility Costs Event1 | $18,695 | RentFacilityCostsEvent1Amt |
| Food And Beverage Event1 | $4,575 | FoodAndBeverageEvent1Amt |
| Entertainment Event1 | $4,251 | EntertainmentEvent1Amt |
| Event2 | COMEDY FOR A CURE | Event2Nm |
| Gross Receipts Event2 | $264,046 | GrossReceiptsEvent2Amt |
| Charitable Contri Event2 | $251,435 | CharitableContriEvent2Amt |
| Gross Revenue Event2 | $12,611 | GrossRevenueEvent2Amt |
| Non Cash Prizes Event2 | $7 | NonCashPrizesEvent2Amt |
| Rent Facility Costs Event2 | $14,007 | RentFacilityCostsEvent2Amt |
| Food And Beverage Event2 | $32,181 | FoodAndBeverageEvent2Amt |
| Entertainment Event2 | $1,500 | EntertainmentEvent2Amt |
| Other Events Total | 11 | OtherEventsTotalCnt |
| Gross Receipts Other Events | $430,646 | GrossReceiptsOtherEventsAmt |
| Charitable Contri Other Events | $427,129 | CharitableContriOtherEventsAmt |
| Gross Revenue Other Events | $3,517 | GrossRevenueOtherEventsAmt |
| Non Cash Prizes Other Events | $5,255 | NonCashPrizesOtherEventsAmt |
| Rent Fclty Costs Other Events | $973 | RentFcltyCostsOtherEventsAmt |
| Food And Beverage Other Events | $1,639 | FoodAndBeverageOtherEventsAmt |
| Entertainment Other Events | $943 | EntertainmentOtherEventsAmt |
| Oth Direct Expnss Other Events | $16 | OthDirectExpnssOtherEventsAmt |
| Gross Receipts Total | $1,634,815 | GrossReceiptsTotalAmt |
| Charitable Contributions Tot | $1,558,687 | CharitableContributionsTotAmt |
| Gross Revenue Total Events | $76,128 | GrossRevenueTotalEventsAmt |
| Non Cash Prizes Total Events | $47,205 | NonCashPrizesTotalEventsAmt |
| Rent Fclty Costs Total Events | $33,675 | RentFcltyCostsTotalEventsAmt |
| Food And Beverage Total Events | $38,395 | FoodAndBeverageTotalEventsAmt |
| Entertainment Total Events | $6,694 | EntertainmentTotalEventsAmt |
| Oth Direct Expnss Total Events | $16 | OthDirectExpnssTotalEventsAmt |
| Direct Expense Summary Events | $125,985 | DirectExpenseSummaryEventsAmt |
| Net Income Summary | -$49,857 | NetIncomeSummaryAmt |
Schedule I IRS990ScheduleI
| Field | Value | IRS element (for citing) |
|---|---|---|
| Grant Records Maintained | Yes (1) | GrantRecordsMaintainedInd |
Recipient Table RecipientTable (8 entries)
| Address Line1USAddress/AddressLine1Txt | CityUSAddress/CityNm | State AbbreviationUSAddress/StateAbbreviationCd | ZIPUSAddress/ZIPCd | Recipient EINRecipientEIN | IRC SectionIRCSectionDesc | Cash GrantCashGrantAmt | Purpose Of GrantPurposeOfGrantTxt |
|---|---|---|---|---|---|---|---|
| BRIGHAM & WOMAN'S HOSPITAL | |||||||
| 75 ST FRANCIS STREET | BOSTON | MA | 02115 | 042312909 | 501 (C)(3) | $143,750 | RESEARCH GRANTS |
| UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER | |||||||
| 5323 HARRY HINES BLVD | DALLAS | TX | 75287 | 756002868 | 501 (C)(3) | $75,000 | RESEARCH GRANTS |
| UT HEALTH SCIENCE CENTER AT HOUSTON | |||||||
| 7000 FANNIN UCT 1000 | HOUSTON | TX | 77030 | 741761309 | 501 (C)(3) | $10,313 | RESEARCH GRANTS |
| WAYNE STATE UNIVERSITY | |||||||
| 5057 WOODWARD STE 13202 | DETROIT | MI | 48202 | 386028429 | 501 (C)(3) | $50,000 | RESEARCH GRANTS |
| YALE UNIVERSITY | |||||||
| POBOX 1873 | NEW HAVEN | CT | 06508 | 060646973 | 501 (C)(3) | $18,522 | RESEARCH GRANTS |
| WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY | |||||||
| 575 LEXINGTON AVE 9TH FLOOR | NEW YORK | NY | 10022 | 131623978 | 501 (C)(3) | $21,000 | RESEARCH GRANTS |
| PRESIDENT & FELLOWS OF HARVARD COLLEGE | |||||||
| POBOX 415649 | BOSTON | MA | 02241 | 042103580 | 501 (C)(3) | $50,000 | RESEARCH GRANTS |
| UNIVERSITY OF CINCINNATI | |||||||
| UNIVERSITY HALL SUITE ML0222 | CINCINNATI | OH | 45221 | 316000989 | 501 (C)(3) | $20,000 | RESEARCH GRANTS |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Total501c3 Org | 8 | 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 TS ALLIANCE HAS FUNDED MORE THAN $20.7 MILLION IN RESEARCH ON TSC SINCE 1984. DIRECTED BY STEVEN L. ROBERDS, PH.D, CHIEF SCIENTIFIC OFFICER, THE TS ALLIANCE RESEARCH GRANTS PROGRAM FUNDS RESEARCH FOCUSED ON TSC WITH PRIORITIES SET BY THE RESEARCHERS TOGETHER WITH THE TS ALLIANCE. COLLABORATIONS BETWEEN BASIC AND CLINICAL RESEARCHERS ARE ENCOURAGED AND FOSTERED, AND THE TS ALLIANCE IS WORKING TO INCREASE FUNDING FOR RESEARCH ON TSC. THROUGH THE TS ALLIANCE RESEARCH GRANTS PROGRAM, APPLICATIONS CAN BE SUBMITTED FOR: POSTDOCTORAL FELLOWSHIPS 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 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 (3 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 |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| KARI L ROSBECK | ||||||||||||||
| PRESIDENT & CEO | $169,536 | $3,140 | $17,328 | $321 | $130 | $2 | $5,848 | $108 | $31,043 | $575 | $223,885 | $4,146 | $0 | $0 |
| RICHARD A GOLLUB | ||||||||||||||
| CONTROLLER & CFO | $125,314 | $7,999 | $13,267 | $847 | $358 | $23 | $4,382 | $280 | $30,017 | $1,916 | $173,338 | $11,065 | $0 | $0 |
| STEVEN L ROBERDS | ||||||||||||||
| CHIEF SCIENTIFIC OFFICER | $180,565 | $0 | $19,143 | $0 | $133 | $0 | $6,228 | $0 | $29,013 | $0 | $235,082 | $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, JAYE ISHAM AND LISA MOSS 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, JAYE ISHAM AND LISA MOSS 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
Securities Publicly Traded SecuritiesPubliclyTradedGrp
| Field | Value | IRS element (for citing) |
|---|---|---|
| Non Cash Checkbox | Yes (X) | NonCashCheckboxInd |
| Contribution | 5 | ContributionCnt |
| Noncash Contributions Rpt F990 | $47,237 | NoncashContributionsRptF990Amt |
| Method Of Determining Revenues | FMV | MethodOfDeterminingRevenuesTxt |
Other Non Cash Contri Table OtherNonCashContriTableGrp (3 entries)
| Non Cash CheckboxNonCashCheckboxInd | DescDesc | ContributionContributionCnt | Noncash Contributions Rpt F990NoncashContributionsRptF990Amt | Method Of Determining RevenuesMethodOfDeterminingRevenuesTxt |
|---|---|---|---|---|
| Yes (X) | SPORTING EVENT TICKETS | 1 | $9,170 | FMV |
| Yes (X) | FIDGET SPINNERS | 1 | $250 | FMV |
| Yes (X) | KEYCHAINS | 1 | $248 | FMV |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Any Property That Must Be Held | 0 | AnyPropertyThatMustBeHeldInd |
| Review Process Unusual NC Gifts | 0 | ReviewProcessUnusualNCGiftsInd |
| Third Parties Used | 0 | ThirdPartiesUsedInd |
Schedule O IRS990ScheduleO
Supplemental Information Detail SupplementalInformationDetail (6 entries)
| Form And Line ReferenceFormAndLineReferenceDesc | ExplanationExplanationTxt |
|---|---|
| FORM 990, PART VI, SECTION A, LINE 6 | MEMBERSHIP IS AVAILABLE TO ANY PERSON WHO SUBSCRIBES TO THE PURPOSES AND OBJECTIVES OF THE CORPORATION, WITHOUT REGARD TO RACE, RELIGION, GENDER, SEXUAL ORIENTATION, AGE, COLOR, NATIONAL ORIGIN OR MENTAL OR PHYSICAL HANDICAP OR DISABILITY. THERE SHALL BE NO LIMIT TO THE NUMBER OF MEMBERS IN THE CORPORATION. 1) THERE MAY BE ONE OR MORE CLASSES OF MEMBERSHIP AS DETERMINED BY THE BOARD. 2) MEMBERSHIP IS NOT TRANSFERABLE OR ASSIGNABLE. |
| FORM 990, PART VI, SECTION A, LINE 7A | THE TS ALLIANCE IS A MEMBERSHIP-BASED ORGANIZATION, WHICH MEANS MEMBERS HELP ELECT THE BOARD OF DIRECTORS. THE TS ALLIANCE MEMBERSHIP PROGRAM ALLOWED INDIVIDUALS TO STATE THEIR INTENT TO BE A MEMBER FOR THE PURPOSE OF GOVERNANCE. THERE WERE NO LEVELS TO MEMBERSHIP IN 2018. 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 2018: BOARD MEMBER BRENDAN MANNING, PH.D., IS EMPLOYED AT HARVARD COLLEGE, WHICH RECEIVED A $50,000 ROTHBERG COURAGE AWARD GRANT TO STUDY TO STUDY THE REPURPOSING OF CLINICALLY APPROVED IMMUNOSUPPRESSANTS AS A SAFE AND EFFECTIVE TREATMENT FOR TSC. BOARD MEMBER MARTINA BEBIN, MD, MPA, IS EMPLOYED AT THE UNIVERSITY OF ALABAMA AT BIRMINGHAM, WHICH RECEIVED $11,495 FOR HER WORK ON THE TSC NATURAL HISTORY DATABASE. |
| FORM 990, PART VI, SECTION B, LINE 15 | THE COMPENSATION COMMITTEE REVIEWS AND APPROVES THE SALARIES OF THE PRESIDENT/CEO, CHIEF SCIENTIFIC OFFICER, CONTROLLER & CFO, AND ANY EMPLOYEE APPEARING ON THE FORM 990, IN ACCORDANCE WITH THE TUBEROUS SCLEROSIS ALLIANCE BYLAWS. SUCH REVIEW AND APPROVAL OCCURS INITIALLY UPON HIRING, UPON ANNUAL REVIEWS AND WHENEVER MODIFIED. THE ORGANIZATION'S EXECUTIVE REMUNERATION HAS BEEN STRUCTURED TO ENSURE THAT IT: IS REASONABLE; PROVIDES A COMPETITIVE COMPENSATION PROGRAM TO RETAIN, ATTRACT AND REWARD KEY EMPLOYEES AND ACHIEVES CLEAR ALIGNMENT BETWEEN TOTAL REMUNERATION AND DELIVERED BUSINESS AND PERSONAL PERFORMANCE OVER THE SHORT AND LONG-TERMS. THE COMPENSATION IS REVIEWED BY THE COMPENSATION COMMITTEE TO ENSURE: - COMPARABILITY, - PROPER REVIEW, AND - SUBSTANTIATION IN SETTING THE COMPENSATION. |
| FORM 990, PART VI, SECTION C, LINE 19 | ALL GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE AVAILABLE UPON WRITTEN REQUEST. |
Schedule R IRS990ScheduleR
Id Related Tax Exempt Org IdRelatedTaxExemptOrgGrp
Disregarded Entity Name DisregardedEntityName
| Field | Value | IRS element (for citing) |
|---|---|---|
| Business Name Line1 | TUBEROUS SCLEROSIS ALLIANCE ENDOWMENT FD | BusinessNameLine1Txt |
US Address USAddress
| Field | Value | IRS element (for citing) |
|---|---|---|
| Address Line1 | 801 ROEDER ROAD STE 750 | AddressLine1Txt |
| City | SILVER SPRING | CityNm |
| State Abbreviation | MD | StateAbbreviationCd |
| ZIP | 20910 | ZIPCd |
| Field | Value | IRS element (for citing) |
|---|---|---|
| EIN | 521926919 | EIN |
| Primary Activities | SUPPORT ORG | 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 | TUBEROUS SCLEROSIS ALLIANCE ENDOWMENT FUND | BusinessNameLine1Txt |
| Field | Value | IRS element (for citing) |
|---|---|---|
| Transaction Type | C | TransactionTypeTxt |
| Involved | $50,000 | InvolvedAmt |
| Method Of Amount Determination | CASH | MethodOfAmountDeterminationTxt |
Comments