2020-04-13T11:35:05-05:00 2019-12-31 420714325 RSM US LLP 2021 L STREET NW SUITE 400 WASHINGTON DC 20036 990 2019-01-01 953018799 NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC NATI 3015629890 8737 COLESVILLE ROAD NO 400 SILVER SPRING MD 20910 KARI L ROSBECK PRESIDENT & CEO 3015629890 2020-04-13 1 ELIZABETH HELLER P00397829 2022932200 100.15.78.171 2020-04-13 11:35:01 ED P DA39A3EE5E6B4B0D3255BFEF95601890AFD80709 907A16943A5AE6BD468F5755AE9454C37C362E74 2019 2020-11-19 02:30:22Z X TUBEROUS SCLEROSIS ALLIANCE KARI L ROSBECK 8737 COLESVILLE ROAD NO 400 SILVER SPRING MD 20910 7030007 0 X WWW.TSALLIANCE.ORG X 1975 CA FINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THOSE AFFECTED. 25 25 22 2122 0 0 4105376 5527543 1884102 461658 12198 27826 -510235 699207 5491441 6716234 464190 617106 0 0 2013185 2223956 0 0 1021467 3391158 2798273 5868533 5639335 -377092 1076899 9281566 10351316 601878 594729 8679688 9756587 X 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. 0 0 2469373 552606 461658 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 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 $21.2 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/CAREGIVERS 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. FOR A COMPLETE LIST OF CURRENTLY-FUNDED PROJECTS AS WELL AS AN ARCHIVE OF PAST AWARDEES (BACK TO FY02, PLEASE VISIT: HTTPS://WWW.TSALLIANCE.ORG/RESEARCHERS/GRANTS-AND-FUNDING/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 31, 2019, 2,227 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. BUILDING UPON THE NATURAL HISTORY DATABASE, 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 2019 WITH 967 BIOSAMPLES: 649 BLOOD, BUCCAL CELL, OR TISSUE SAMPLES FROM INDIVIDUALS WITH TSC ENROLLED IN THE TSC NATURAL HISTORY DATABASE, AND AN ADDITIONAL 318 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. IN DECEMBER WE BEGAN COLLECTING BLOOD FROM INDIVIDUALS WITH TSC OF ANY AGE FROM THE CONVENIENCE OF THEIR HOME USING THE MOBILE PHLEBOTOMY COMPANY PHLEBOTEK. THIS ENABLES PEOPLE TO DONATE SAMPLES REGARDLESS OF WHERE THEY LIVE IN THE US AND WHETHER THEY ARE SEEN AT A TSC CLINIC. THANKS TO A GENEROUS DONATION FROM LORNE AND HEIDI WAXLAX, THE WAXLAX BIOSAMPLE COLLECTION INITIATIVE WILL FUND COLLECTION OF 1500 BLOOD SAMPLES COLLECTED IN THIS WAY. TO RAPIDLY GROW AND DRIVE THIS PROJECT, THE TS ALLIANCE HIRED GABRIELLE V. RUSHING, PHD IN DECEMBER 2019 AS ASSOCIATE DIRECTOR, RESEARCH. GABRIELLE COMPLETED HER PHD AT VANDERBILT UNIVERSITY, STUDYING TSC SEGA TUMOR DEVELOPMENT AND NEURAL STEM CELLS UNDER THE GUIDANCE OF DR. REBECCA IHRIE. PRIOR TO JOINING THE TS ALLIANCE, GABRIELLE SERVED AS PROJECT MANAGER FOR THE PREDICT (PHARMACOGENOMIC RESOURCE FOR ENHANCED DECISIONS IN CARE AND TREATMENT) PROGRAM AT VANDERBILT UNIVERSITY MEDICAL CENTER. GABRIELLE HAS PREVIOUS EXPERIENCE WORKING WITH NON-PROFITS INCLUDING AN INTERNSHIP AT THE TS ALLIANCE IN 2017, WHERE SHE PARTICIPATED IN THE MARCH ON THE HILL, CONTRIBUTED TO THE PATIENT-FOCUSED DRUG DEVELOPMENT MEETING AND WROTE THE RESEARCH PRESENTATION SUMMARIES FOR THE INTERNATIONAL TSC AND LAM RESEARCH CONFERENCE.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. 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 GRAFT EXPERIMENTS BEGAN IN AUGUST 2017 AT PORSOLT, ANOTHER CONTRACT RESEARCH ORGANIZATION. THE TS ALLIANCE HAS ALSO DRIVEN NOVEL MODEL DEVELOPMENT, INCLUDING A SYNGENEIC TUMOR GRAFT MODEL AT PORSOLT IN 2019. THE TS ALLIANCE PARTNERED WITH VAN ANDEL RESEARCH INSTITUTE, THE CONTRACT RESEARCH ORGANIZATION THAT BOTH HOUSES THE BIOSAMPLE REPOSITORY AND MAINTAINS THE COLONY OF TSC2+/- AJ MICE, TO RUN EXPERIMENTS IN THOSE MICE ON BEHALF OF THE PRECLINICAL CONSORTIUM TO STREAMLINE THE RESEARCH PROCESS. TWO PHARMACEUTICAL COMPANIES JOINED THE PRECLINICAL CONSORTIUM IN 2019, BRINGING THE CUMULATIVE TOTAL TO ELEVEN INDUSTRY PARTNERS, FIVE OF WHOM REMAIN ACTIVE MEMBERS. THE TSC PRECLINICAL RESEARCH CONSORTIUM RAN 16 STUDIES TO TEST 12 COMPOUNDS IN 2019, COMPARED TO 12 STUDIES AND 10 COMPOUNDS IN 2019. NOTABLY, THE CONSORTIUM RAN TWO STUDIES RELEVANT TO TSC-ASSOCIATED NEUROPSYCHIATRIC DISORDERS (TAND) MODEL DEVELOPMENT, A KEY PRIORITY FOR THE TSC COMMUNITY. 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. NOW CONSISTING OF THIRTEEN SITES, THE CONSORTIUM HAS RECEIVED MORE THAN $35 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 BUILDS DIRECTLY UPON THE CONSORTIUM'S FIRST CLINICAL STUDY FROM WHICH RESULTS HAVE BEEN PUBLISHED (WWW.NCBI.NLM.NIH.GOV/PUBMED/31691264) SHOWING THAT ABNORMAL ACTIVITY ON EEGS PREDICTS ONSET OF 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. THIS DESCRIPTION IS CONTINUED ON LINE 4D. 744912 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 2019 THE TS ALLIANCE FACILITATED 32,932 PEER-TO-PEER SUPPORTS FROM ADULT REGIONAL COORDINATORS (10), CLINIC AMBASSADORS (24), DEPENDENT ADULT TRANSITION RESOURCE COORDINATORS (31), EDUCATION PARENT MENTORS (33), AND COMMUNITY ALLIANCE LEADERS (93) THROUGH THE TSC CONNECT PROGRAM AND JUNIOR LEADERS (4).EDUCATION PARENT MENTORS ATTENDED 128 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. MANY OF THE SCHOOL SYSTEMS REQUESTED "TSC 101" IN AN EFFORT TO HELP THEM UNDERSTAND THE COMPLEXITIES OF TSC AND LEARNING ISSUES FOR CHILDREN WITH TSC. THERE WERE THREE NEW PUBLICATIONS DEVELOPED TO SUPPORT FAMILIES IN THE AREA OF EDUCATION EARLY CHILDHOOD IN EDUCATION, TSC ASSOCIATED NEUROPSYCOLOGICAL DISORDERS (TAND) AND EDUCATION, AND THE BODY OF SAMPLE LETTERS: EVERYTHING YOU NEED TO BUILD A PAPER TRAIL FOR YOUR CHILD'S SPECIAL EDUCATION CAREER. 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 1,405 FAMILIES/INDIVIDUALS LIVING WITH TSC. THE COMMUNITY PROGRAMS TEAM SUPPORTS THE COMMUNITY ALLIANCES IN TWO REGIONS, WITH A COMMUNITY PROGRAMS MANAGER ASSIGNED TO EACH REGION TO MANAGE THE DAY-TO-DAY ACTIVITIES WITHIN THEIR COMMUNITIES. IN 2019, OF 97 LEADERSHIP POSITIONS (44 COMMUNITY ALLIANCE CHAIRS, CO-CHAIRS AND VICE CHAIRS, 49 WALK CHAIRS AND CO-CHAIRS AND 4 JUNIOR LEADERS), 92 POSITIONS WERE FILLED WITH FIVE OPEN AS OF DECEMBER 31, 2019. IN 2019, THE TS ALLIANCE CO-HOSTED FIVE REGIONAL CONFERENCES WITH THE LAM FOUNDATION IN BOSTON, ST. LOUIS, CHICAGO, ATLANTA AND LOS ANGELES. THESE EVENTS DREW 503 TOTAL ATTENDEES FROM 29 STATES. THE CONFERENCES INCLUDED TWO GENERAL SESSIONS AT THE BEGINNING AND END OF THE DAY AND THREE BREAKOUT TRACKS WITH PRESENTATIONS SPECIFIC TO CHILDREN WITH TSC (PEDIATRIC TRACK), TRANSITIONING FROM CHILDHOOD TO ADULTHOOD (TRANSITION TRACK) AND ADULT SESSIONS FOR TSC AND LAM (ADULT TRACK). THE OPENING SESSION FOCUSED ON RESEARCH UPDATES AND UPCOMING CLINICAL TRIALS. 438744 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 2019, 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 36,450 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 9,800 MEMBERS, WHILE ITS TWITTER AND INSTAGRAM ACCOUNTS HAVE 2,240-PLUS AND 1,800-PLUS FOLLOWERS RESPECTIVELY. IN 2019, THE TS ALLIANCE INTRODUCED A NEW PODCAST SERIES CALLED TSC NOW, RESULTING IN 8 EPISODES WITH MORE THAN 1,400 TOTAL DOWNLOADS. A NEW ELECTRONIC BI-MONTHLY NEWSLETTER, TSC MATTERS, WAS ALSO INTRODUCED; FIVE ISSUES IN 2019 REACHED 5,800 EACH. 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 15.8 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 MEDIA TOUR, WHICH GAINED 235,812 BROADCAST IMPRESSIONS. WITH ADDITIONAL NEWS RELEASES, THE TS ALLIANCE REACHED ANOTHER 313 MILLION. 165225 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 TS ALLLIANCE ADVOCATED FOR STATE FUNDING FOR TSC CENTERS IN MISSOURI AND MARYLAND, RESULTING IN $750,000 IN STATE APPROPRIATIONS. 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 2019. 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, 232 DEMOCRATIC AND REPUBLICAN REPRESENTATIVES SIGNED A BIPARTISAN DEAR COLLEAGUE LETTER OF SUPPORT FROM REPRESENTATIVES DAVE LOEBSACK (D-IA) AND MARKWAYNE MULLIN (R-OK). THE SENATE LETTER WAS SPONSORED BY SENATORS CHRIS MURPHY (D-CT) AND JOHNNY ISAKSON (R-GA) AND ENDED WITH 35 SIGNATURES. IN FY2020, THE TSC RESEARCH PROGRAM AT THE CDMRP RECEIVED A $6 MILLION APPROPRIATION, BRINGING THE CUMULATIVE FUNDING TO $89 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. 184365 64000 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. THE TS ALLIANCE 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. 92979 500 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 40 PROFESSIONAL MEETINGS INCLUDING: DEFENSE HEALTH RESEARCH CONSORTIUM, BIOMEDICAL TRANSPARENCY'S BIOMEDICAL TRANSPARENCY SUMMIT, NIH/NINDS EPILEPSY THERAPY SCREENING PROGRAM (ETSP), NIH RARE DISEASE DAY, RARE DISEASE LEGISLATIVE ADVOCATES, HEALTH RESEARCH ALLIANCE (HRA) SPRING MEETING, WORLD CONGRESS SUMMIT ON PATIENT ADVOCACY, AMERICAN THORACIC SOCIETY (ATS) HILL DAY, PEDIATRIC NEUROLOGY UPDATE, INTERAGENCY COLLABORATIVE TO ADVANCE RESEARCH IN EPILEPSY (ICARE), IMPACT OF RARE DISEASES: BRIDGING THE COMMONALITIES, RARE DISEASES CLINICAL RESEARCH NETWORK (RDCRN) COALITION OF PATIENT ADVOCACY GROUPS (CPAG), WORLD ORPHAN DRUG CONGRESS, ALABAMA WOMEN OF IMPACT AWARDS, GLOBAL GENES' DATA DIY, NIH TRANSCOORDINATING COMMITTEE, ATS INTERNATIONAL CONFERENCE, NINDS NONPROFIT FORUM, INTERNATIONAL SOCIETY FOR AUTISM RESEARCH (INSAR) INTERNATIONAL CONFERENCE, DRUG INFORMATION ASSOCIATION (DIA), INTERNATIONAL TSC RESEARCH CONFERENCE WITH TUBEROUS SCLEROSIS COMPLEX INTERNATIONAL (TSCI) WORKING GROUP MEETING, WORLD PHARMA WEEK, BRAIN RECOVERY PROJECT, INTERNATIONAL SOCIETY FOR AUTONOMIC NEUROSCIENCE (ISAN), ATS LEADERSHIP SUMMIT, HRA FALL MEETING, GLOBAL GENES RARE PATIENT ADVOCACY SUMMIT, DIA PROGRAM PLANNING MEETING, SOCIETY FOR NEUROSCIENCE, CHILD NEUROLOGY FOUNDATION SYMPOSIUM ON HARMFUL AND DISRUPTIVE BEHAVIORS, NATIONAL ORGANIZATION FOR RARE DISEASES (NORD) BREAKTHROUGH SUMMIT, EPILEPSY LEARNING HEALTHCARE SYSTEM FALL LEARNING SESSION, LENNOX-GASTAUT SYNDROME (LGS) PATIENT-FOCUSED DRUG DEVELOPMENT MEETING, AMERICAN SOCIETY FOR NEPHROLOGY, PATIENT ORGANIZATION PERSPECTIVES ON THE PATIENT DATA EXCHANGE WORKSHOP, NEURODEVELOPMENTAL DISORDERS SYMPOSIUM, RDCRN CPAG PUBLIC WORKSHOP ON PATIENT-FOCUSED DRUG DEVELOPMENT (FDA), AMERICAN EPILEPSY SOCIETY. IN ADDITION, AT THE AMERICAN EPILEPSY SOCIETY MEETING THE TS ALLIANCE CO-HOSTED A RECEPTION WITH THE UNIVERSITY OF MARYLAND. MORE THAN 100 GUESTS WERE IN ATTENDANCE, INCLUDING THE GOVERNOR OF MARYLAND, LARRY HOGAN, WHO ADDRESSED ATTENDEES. OTHER SPEAKERS INCLUDED TS ALLIANCE LEADERSHIP, COMMUNITY MEMBERS, AND UNIVERSITY OF MARYLAND OFFICIALS. 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 2019 INTERNATIONAL TSC RESEARCH CONFERENCE: CHANGING THE COURSE OF TSC HELD JUNE 20-22, 2019, WELCOMED 251 PEOPLE FROM 28 COUNTRIES TO THE CHELSEA HOTEL IN TORONTO, CANADA. SPONSORED BY THE TS ALLIANCE, TUBEROUS SCLEROSIS CANADA SCLEROSE TUBEREUSE (TSCST) AND THE TS ALLIANCE OF MEXICO, THE CONFERENCE FEATURED 34 ORAL PRESENTATIONS AND 62 POSTERS. ADDITIONALLY, THREE BREAKOUT GROUPS OF CLINICAL AND BASIC SCIENCE RESEARCHERS DISCUSSED TIMELY TOPICS OF INDUCED PLURIPOTENT STEM CELL APPLICATIONS FOR TSC, GENETIC HETEROGENEITY AND MODIFIERS, AND CLINICAL TRIAL DESIGN FOR NEUROLOGICAL ASPECTS OF TSC. ON JUNE 22, AN EDUCATIONAL MEETING FOR TSC COMMUNITY MEMBERS, IN PARALLEL WITH THE SCIENTIFIC SESSIONS, ATTRACTED MORE THAN 70 PEOPLE TO LEARN FROM INTERNATIONAL EXPERTS. TSC INTERNATIONAL HELD AN IMPROVING CARE WORKSHOP WITH PARTICIPANTS FROM 25 COUNTRIES. THE CONFERENCE'S CLOSING SESSION WAS A JOINT SESSION INCLUDING INDIVIDUALS AND FAMILIES AFFECTED BY TSC TOGETHER WITH RESEARCHERS IN A DISCUSSION OF PRIORITIES FOR IMPORTANT AND TIMELY CLINICAL STUDIES IN TSC. THIRTY-SEVEN ATTENDEES REGISTERED FOR THE EDUCATIONAL MEETING ONLY, AND 51 OF THE 214 WHO REGISTERED FOR THE FULL CONFERENCE WERE EARLY CAREER RESEARCHERS. A SYMPOSIUM SPECIFICALLY FOR - AND ORGANIZED BY - EARLY CAREER RESEARCHERS WAS HELD JUNE 20 BEFORE THE FULL CONFERENCE BEGAN TO PROVIDE AN OPPORTUNITY FOR THEM TO GET FEEDBACK FROM EACH OTHER AND FROM SENIOR SCIENTISTS ON SELECTED ORAL PRESENTATIONS AND CAREER-DEVELOPMENT TOPICS. 442569 64500 4095598 1 1 0 1 0 0 0 0 0 1 1 0 0 1 1 0 0 1 0 0 1 1 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 1 46 0 1 22 1 0 0 0 0 0 1 1 0 0 0 0 0 0 X 25 25 0 0 0 0 1 1 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 AL AR CA FL GA HI IL IN KS KY MD MA MI MN MS NH NJ NM NY NC OR PA RI SC TN UT VA WI WV X X X THE ORGANIZATION 3015629890 8737 COLESVILLE ROAD NO 400 SILVER SPRING MD 20910 CHRIS RUSSELL CHAIR (FROM 7/2019) 5.00 0.00 X X 0 0 0 BETH DEAN CHAIR (TIL 7/2019) 5.00 0.00 X X 0 0 0 CASSANDRA CARROLL VICE CHAIR 5.00 0.00 X X 0 0 0 TIM DILLS IMMEDIATE PAST CHAIR 5.00 0.00 X X 0 0 0 TARA ZIMMERMAN SECRETARY 5.00 0.00 X X 0 0 0 DARREN MILES TREASURER 5.00 0.00 X X 0 0 0 JOHN J BISSLER MD BOARD MEMBER 2.00 0.00 X 0 0 0 MATT BOLGER BOARD MEMBER 2.00 0.00 X 0 0 0 SARA CHIEFFO BOARD MEMBER 2.00 0.00 X 0 0 0 DAVID COIT BOARD MEMBER 2.00 0.00 X 0 0 0 MARGARET COX BOARD MEMBER 2.00 0.00 X 0 0 0 PETER CRINO MD PHD BOARD MEMBER 2.00 0.00 X 0 0 0 BONNIE HOGUE DUFFY BOARD MEMBER 2.00 0.00 X 0 0 0 STEVEN GOLDSTEIN BOARD MEMBER 2.00 0.00 X 0 0 0 ROB GRANDIA BOARD MEMBER 2.00 0.00 X 0 0 0 TOM GWINN BOARD MEMBER 2.00 0.00 X 0 0 0 DANA HOLINKA BOARD MEMBER 2.00 0.00 X 0 0 0 DARCY A KRUEGER BOARD MEMBER 2.00 0.00 X 0 0 0 HEATHER LENS BOARD MEMBER 2.00 0.00 X 0 0 0 JIM MAGINN BOARD MEMBER 2.00 0.00 X 0 0 0 BRENDAN D MANNING PHD BOARD MEMBER 2.00 0.00 X 0 0 0 DIANE MCSWAIN BOARD MEMBER (FROM 12/2019) 2.00 0.00 X 0 0 0 ADOLFO ORIVE BOARD MEMBER (TIL 5/2019) 2.00 0.00 X 0 0 0 MUSTAFA SAHIN BOARD MEMBER 2.00 0.00 X 0 0 0 SEAN SHILLINGER BOARD MEMBER 2.00 0.00 X 0 0 0 JUDY SHOULAK BOARD MEMBER (FROM 8/2019) 2.00 0.00 X 0 0 0 MATTHEW SIMONIAN BOARD MEMBER 2.00 0.00 X 0 0 0 KARI L ROSBECK PRESIDENT & CEO 54.00 1.00 X 195071 3612 33181 RICHARD GOLLUB CFO 47.00 3.00 X 146474 9350 29692 STEVEN L ROBERDS CHIEF SCIENTIFIC OFFICER 45.00 0.00 X 209520 0 28079 DEAN RAGER-AGUIAR DIRECTOR, PRECLINICAL RESEARCH 45.00 0.00 X 142036 0 27130 JAYE D ISHAM VP, COMMUNICATIONS STRATEGY 45.00 0.00 X 113018 0 4626 LISA M MOSS SR DIRECTOR OF DONOR RELATIONS 45.00 0.00 X 104957 0 23739 911076 12962 146447 6 0 1 0 PSYCHOGENICS INC 20 GRAMERCY PARK SOUTH NEW YORK NY 10003 RESEARCH LAB SERVICES 218333 PORSOLT SAS ZA DE GLATIGNE LE GENESTSAINTISLE FR 53940 RESEARCH LAB SERVICES 140155 VAN ANDEL RESEARCH INSTITUTE 333 BOSTWICK AVE NE GRAND RAPIDS MI 49503 LABORATORY SERVICES 119005 CAVAROCCHI RUSCIO DENNIS AND ASSOCIATES 600 MARYLAND AVE SW WASHINGTON DC 20024 GOVERNMENT RELATIONS 103164 4 35476 4329 2417642 180000 2890096 51895 5527543 CONTRACT REVENUE 900099 247384 247384 CONFERENCE REVENUE 900099 214274 214274 461658 27444 27444 45638 45256 382 382 382 245139 2417642 268517 -23378 -23378 CHANGE INT-ENDOWMENT 900099 721871 721871 MISCELLANEOUS 900099 714 714 722585 6716234 247384 0 941307 X 474302 474302 142804 142804 672082 404350 107523 160209 1242198 751154 201228 289816 34402 20148 5143 9111 150458 88118 22493 39847 124816 73100 18660 33056 29600 14728 14872 24200 24200 110760 110760 278557 136817 14939 126801 340397 145984 21498 172915 190555 113335 30054 47166 92966 54001 14790 24175 341541 283901 3302 54338 278816 246936 20440 11440 95440 70843 6521 18076 8022 4665 1286 2071 PRECLINICAL CONSORTIUM 579493 579493 NHD BIOSAMPLE REPOSIT 355027 355027 DUES AND SUBSCRIPTIONS 66537 22505 13130 30902 MISCELLANEOUS EXPENSES 6362 2627 2191 1544 5639335 4095598 522270 1021467 X 79827 39914 0 39913 785107 809370 1469865 1227121 1249706 2033626 158782 10243 263093 251370 391656 311435 169346 80221 65 27556 5185602 5911809 9281566 10351316 452001 532853 114499 54700 35378 7176 601878 594729 X 5024877 5661364 3654811 4095223 8679688 9756587 9281566 10351316 1076899 0 X 0 1 X 1 0 X 3514873 4517826 3949953 4105376 5527543 21615571 3514873 4517826 3949953 4105376 5527543 21615571 3708214 17907357 16038 15431 10393 13784 27444 83090 44490 44490 1401 1683 642 1243 714 5683 21748834 6820021 0.82340 0.82870 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: INCOME FROM ACTIVITIES NOT REGULARLY CARRIED ON - 2015 AMOUNT: $ 1,401. 2016 AMOUNT: $ 1,683. 2017 AMOUNT: $ 642. 2018 AMOUNT: $ 1,243. 2019 AMOUNT: $ 714. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 2491 162735 165226 5742626 5907852 445393 111348 0 0 394622 416065 450555 445393 1706635 2559953 145927 146199 149340 165226 606692 98656 104016 112639 111348 426659 639989 986 1797 823 2491 6097 5193934 78962 959121 288356 27856 5915805 5655555 82346 -439321 50000 54646 5193934 5293989 92635 739072 403000 67141 5655555 4763517 58749 525868 54145 5293989 5061299 29940 93294 202000 32428 4950105 0.85130 0.14870 0.00000 0 1 1 156545 151059 5486 155880 81145 74735 79231 79231 0 80221 INTEREST IN NET ASSETS OF AFFI 5915805 DUE FROM AFFILIATE -3996 5911809 DEFERRED RENT & LEASE INCENTIVE 7176 7176 6864498 148264 148264 6716234 0 6716234 5787599 148264 148264 5639335 0 5639335 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. 1 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 GRANTMAKING 82804 NORTH AMERICA 0 0 GRANTMAKING 35000 MIDDLE EAST AND NORTH AFRICA - ALGERIA, BAHRAIN, DJIBOUTI, EGYPT, 0 0 GRANTMAKING 25000 EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM 0 0 PROGRAM SERVICE ACTIVITIES PRECLINICAL RESEARCH STUDIES 140155 0 0 0 0 0 0 282959 0 282959 EUROPE/ICELAND/GREENLAND RESEARCH ON TUBEROUS SCLEROSIS COMPLEX 58804 WIRE EUROPE (INCLUDING ICELAND & GREENLAND) - ALBANIA, ANDORRA, AUSTRIA, BELGIUM PROGRAMMATIC SUPPORT 24000 WIRE NORTH AMERICA RESEARCH ON TUBEROUS SCLEROSIS COMPLEX 20000 CHECK NORTH AMERICA PROGRAMMATIC SUPPORT 15000 WIRE MIDDLE EAST AND NORTH AFRICA PROGRAMMATIC SUPPORT IN ISRAEL 25000 WIRE 3 2 0 0 0 0 0 0 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: 45TH ANNIVERSARY GALA 1069016 953817 115199 2031 72152 43042 10692 WALKS 902981 827981 75000 39411 17615 4978 4672 11 690784 635844 54940 2997 35889 32992 2046 2662781 2417642 245139 44439 125656 81012 17410 268517 -23378 1 BRIGHAM & WOMAN'S HOSPITAL 75 SAINT FRANCIS STREET BOSTON MA 02115 042312909 501(C)(3) 70625 RESEARCH GRANTS UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER 5323 HARRY HINES BLVD DALLAS TX 75287 756002868 501(C)(3) 75000 RESEARCH GRANTS YALE UNIVERSITY POBOX 1873 NEW HAVEN CT 06508 060646973 501(C)(3) 74235 RESEARCH GRANTS AMERICAN THORACIC SOCIETY 25 BROADWAY 18TH FLOOR NEW YORK NY 10004 061548706 501(C)(3) 5500 RESEARCH GRANTS CHILDREN'S HOSPITAL MEDICAL CENTER SPONSORED PRGS ACTG ML 4900 3333 BURNET AVE CINCINNATI OH 45229 310833936 501(C)(3) 50000 RESEARCH GRANTS NATIONAL ORGANIZATION FOR RARE DISORDERS 55 KENOSIA AVENUE DANBURY CT 06810 133223946 501(C)(3) 50000 TSC TRAVEL AND LODGING ASSISTANCE PROGRAM NORTHWESTERN UNIVERSITY 7TH FLOOR RUBLOFF BUILDING CHICAGO IL 60611 362167818 501(C)(3) 18750 RESEARCH GRANTS CHILDREN'S HOSPITAL CORPORATION 300 LONGWOOD AVENUE BOSTON MA 02115 042774441 501(C)(3) 37500 RESEARCH GRANTS BOSTON CHILDREN'S HOSPITAL 300 LONGWOOD AVENUE BOSTON MA 02115 042774441 501(C)(3) 92692 CLINICAL RESEARCH GRANT 9 0 PART I, LINE 2: THE TS ALLIANCE HAS FUNDED MORE THAN $21.2 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 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. X X X X 0 0 0 1 0 1 0 0 0 KARI L ROSBECK PRESIDENT & CEO 173907 3220 21029 389 135 3 6121 113 32054 594 233246 4319 0 0 RICHARD GOLLUB CFO 130561 8334 15541 992 372 24 4571 292 28698 1832 179743 11474 0 0 STEVEN L ROBERDS CHIEF SCIENTIFIC OFFICER 187914 0 21348 0 258 0 6466 0 27314 0 243300 0 0 0 DEAN RAGER-AGUIAR DIRECTOR, PRECLINICAL RESEARCH 141903 0 0 0 133 0 3635 0 27696 0 173367 0 0 0 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. X 3 45256 FMV X 18 6639 FMV 0 0 0 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 2019. 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 2019: BOARD MEMBER MUSTAFA SAHIN, PH.D., M.D., IS EMPLOYED AT HARVARD MEDICAL COLLEGE AND BOSTON CHILDREN'S HOSPITAL, WHICH RECEIVED A $92,692 GRANT AND ADDITIONALLY $20,200 FOR HIS WORK ON THE TSC NATURAL HISTORY DATABASE AND BIOSAMPLE REPOSITORY. BOARD MEMBER DARCY KRUEGER, MD, MPA, IS EMPLOYED AT THE CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER, WHICH RECEIVED A $50,000 GRANT AND ADDITIONALLY $14,630 FOR HIS WORK ON THE TSC NATURAL HISTORY DATABASE AND BIOSAMPLE REPOSITORY. BOARD MEMBER JUDY SHOULAK, IS CEO OF RELATIVELY SPEAKING, WHICH RECEIVED A $4,000 CONSULTING FEE PRIOR TO HER JOINING THE BOARD IN AUGUST 2019, FOR TRAINING TS ALLIANCE STAFF ON GOALS, EXECUTING, OVERCOMING OBSTACLES AND ANALIZING RESULTS. FORM 990, PART VI, SECTION B, LINE 15 THE COMPENSATION COMMITTEE REVIEWS AND APPROVES THE SALARIES OF THE PRESIDENT/CEO, CHIEF SCIENTIFIC OFFICER, CONTROLLER & CFO, AND ANY EMPLOYEE APPEARING ON THE FORM 990, IN ACCORDANCE WITH THE TUBEROUS SCLEROSIS ALLIANCE BYLAWS. SUCH REVIEW AND APPROVAL OCCURS INITIALLY UPON HIRING, UPON ANNUAL REVIEWS AND WHENEVER MODIFIED. THE ORGANIZATION'S EXECUTIVE REMUNERATION HAS BEEN STRUCTURED TO ENSURE THAT IT: IS REASONABLE; PROVIDES A COMPETITIVE COMPENSATION PROGRAM TO RETAIN, ATTRACT AND REWARD KEY EMPLOYEES AND ACHIEVES CLEAR ALIGNMENT BETWEEN TOTAL REMUNERATION AND DELIVERED BUSINESS AND PERSONAL PERFORMANCE OVER THE SHORT AND LONG-TERMS. THE COMPENSATION IS REVIEWED BY THE COMPENSATION COMMITTEE TO ENSURE: - COMPARABILITY, - PROPER REVIEW, AND - SUBSTANTIATION IN SETTING THE COMPENSATION. FORM 990, PART VI, SECTION C, LINE 19 ALL GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE AVAILABLE UPON WRITTEN REQUEST. FORM 990, PART IX: DURING FY 2019, THE TUBEROUS SCLEROSIS ALLIANCE (TS ALLIANCE) AND TS ALLIANCE ENDOWMENT FUND BOARD OF DIRECTORS AUTHORIZED AN UNBUDGETED RESEARCH CAMPAIGN STUDY TO UNDERSTAND THE FEASIBILITY OF CONDUCTING A RESEARCH CAPITAL CAMPAIGN WITH THE GOAL TO CHANGE THE COURSE OF TUBEROUS SCLEROSIS COMPLEX (TSC) FOR THOSE LIVING WITH TSC TODAY AND FOR GENERATIONS TO COME. THIS STUDY WAS AN IMPORTANT STEP TO ENSURE WE UNDERSTOOD THE VIABILITY AND COMMITMENT OF THE TSC COMMUNITY AND DONORS TOWARD THIS BOLD RESEARCH VISION. THIS WAS A ONE-TIME EXPENSE IN 2019 THAT ELEVATED OUR FUNDRAISING EXPENSES AND WE ARE MONITORING FUNDRAISING AND ADMINISTRATIVE EXPENSES IN FY 2020. SIMULTANEOUSLY, FOR THE FIRST TIME IN THREE YEARS, WE SAW A DECLINE IN PRECLINICAL CONSORTIUM TESTING BY INDUSTRY PARTNERS. THE PRECLINICAL STUDIES ARE INCLUDED IN OUR PROGRAM EXPENSES. STEPS HAVE BEEN TAKEN TO DECREASE DOLLARS BUDGETED FOR INDUSTRY STUDIES IN FUTURE YEARS SO TS ALLIANCE PROGRAM EXPENSES ARE LESS IMPACTED BY INDUSTRY STUDIES. AS A RESULT OF THESE CIRCUMSTANCES, IN FY 2019, OUR PROGRAM EXPENSES WERE 72.6% AND OUR FUNDRAISING/ADMINISTRATIVE EXPENSES WERE 27.4%. TUBEROUS SCLEROSIS ALLIANCE ENDOWMENT FD 8737 COLESVILLE ROAD SUITE 400 SILVER SPRING MD 20910 521926919 SUPPORT ORG MD 501(C)(3) LINE 12B, II N/A 0 0 0 1 0 0 0 0 0 0 0 0 0 0 1 1 0 0 0 0 TUBEROUS SCLEROSIS ALLIANCE ENDOWMENT FUND C 180000 CASH