2019-04-05T11:44:07-05:00 2018-12-31 521855942 TATE AND TRYON 2021 L STREET NW SUITE 400 WASHINGTON DC 20036 990 2018-01-01 953018799 NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC NATI 3015629890 801 ROEDER ROAD NO 750 SILVER SPRING MD 20910 KARI L ROSBECK PRESIDENT & CEO 3015629890 2019-04-05 1 ELIZABETH HELLER P00397829 2022932200 216.59.105.130 2019-04-05 11:44:02 ED P DA39A3EE5E6B4B0D3255BFEF95601890AFD80709 8B6C6DF7A8E3B84B5AE7D1943EC3750B5C691B8F 2018 2019-02-21 02:37:17Z TUBEROUS SCLEROSIS ALLIANCE KARI L ROSBECK 801 ROEDER ROAD NO 750 SILVER SPRING MD 20910 5666249 0 X WWW.TSALLIANCE.ORG X 1975 CA FINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THOSE AFFECTED. 24 24 23 2947 0 17094 3949953 4105376 824241 1884102 10221 12198 -41611 -510235 4742804 5491441 535454 464190 0 0 1809048 2013185 0 0 765251 2976795 3391158 5321297 5868533 -578493 -377092 9757301 9281566 700521 601878 9056780 8679688 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 2457381 464190 1884102 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. 1537888 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. 322973 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. 149340 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. 128621 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. 277961 4596203 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 35 0 1 23 1 1 1 0 0 0 0 1 1 0 0 0 0 0 0 X 24 24 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 WV WI X X X THE ORGANIZATION 3015629890 801 ROEDER ROAD STE 750 SILVER SPRING MD 20910 BETH DEAN CHAIR 5.00 0.00 X X 0 0 0 CHRIS RUSSELL 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 CASSANDRA CARROLL SECRETARY 5.00 0.00 X X 0 0 0 JIM MAGINN TREASURER 5.00 0.00 X X 0 0 0 MARTINA BEBIN MD MPA BOARD MEMBER 2.00 0.00 X 0 0 0 JOHN J BISSLER MD BOARD MEMBER 2.00 0.00 X 0 0 0 MICHAEL CAGGIANO 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 DAVID FITZMAURICE 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 LAURA S LUBBERS BOARD MEMBER 2.00 0.00 X 0 0 0 BRENDAN D MANNING PHD BOARD MEMBER 2.00 0.00 X 0 0 0 DARREN MILES BOARD MEMBER 2.00 0.00 X 0 0 0 ADOLFO ORIVE BOARD MEMBER 2.00 0.00 X 0 0 0 REBECCA ANHANG PRICE BOARD MEMBER 2.00 0.00 X 0 0 0 MATTHEW SIMONIAN BOARD MEMBER 2.00 0.00 X 0 0 0 TARA ZIMMERMAN BOARD MEMBER 2.00 0.00 X 0 0 0 KARI L ROSBECK PRESIDENT & CEO 54.00 1.00 X 186994 3463 31736 RICHARD A GOLLUB CONTROLLER & CFO 47.00 3.00 X 138939 8869 30755 STEVEN L ROBERDS CHIEF SCIENTIFIC OFFICER 45.00 0.00 X 199841 0 29403 JAYE D ISHAM VP, COMMUNICATIONS STRATEGY 45.00 0.00 X 109148 0 4510 LISA MOSS SR DIRECTOR OF DONOR RELATIONS 45.00 0.00 X 100873 0 22956 735795 12332 119360 5 0 1 0 PSYCHOGENICS INC 20 GRAMERCY PARK SOUTH NEW YORK NY 10003 RESEARCH LAB SVCS 782961 PORSOLT SAS ZA DE GLATIGNE LEGENESTSAINTISLE FR 53940 RESEARCH LAB SVCS 122260 CAVAROCCHI RUSCIO DENNIS & ASSOC LLC 600 MARYLAND AVE SW STE 835W WASH DC 20024 GOVERNMENT RELATIONS 116914 3 34150 8144 1558687 50000 2454395 56905 4105376 CONTRACT REVENUE 900099 1126302 1126302 CONFERENCE REVENUE 900099 757800 757800 1884102 13784 13784 47237 48823 -1586 -1586 -1586 76128 1558687 125985 -49857 -49857 MISCELLANEOUS 900099 1243 1243 CHANGE INT-ENDOWMENT 900099 -461621 -461621 -460378 5491441 1126302 0 259763 389085 389085 75105 75105 647517 390975 116386 140156 1055494 639990 190359 225145 30191 18306 5445 6440 163661 96332 28819 38510 116322 68468 20483 27371 36660 24376 12216 68 19500 19500 108084 108084 156635 84446 16062 56127 284230 126962 21949 135319 181771 121958 28225 31588 97207 57361 16886 22960 316693 281538 4256 30899 646435 630084 5900 10451 79410 61394 5234 12782 7917 4676 1383 1858 PRECLINICAL CONSORTIUM 1007978 1007978 NATURAL HISTORY DATABAS 170893 170893 BIOSAMPLE REPOSITORY 164328 164328 DUES AND SUBSCRIPTIONS 56969 23021 11632 22316 56448 50843 2344 3261 5868533 4596203 507079 765251 X 73440 36720 0 36720 1079000 785107 1231098 1469865 989299 1249706 278373 158782 344133 263093 430481 261135 186001 169346 10970 65 5638427 5185602 9757301 9281566 472644 452001 167293 114499 60584 35378 700521 601878 X 5975949 5024877 2201387 0 879444 3654811 9056780 8679688 9757301 9281566 -377092 0 X 0 1 X 1 0 X 3124386 3514873 4517826 3949953 4105376 19212414 3124386 3514873 4517826 3949953 4105376 19212414 3185510 16026904 13455 16038 15431 10393 13784 69101 44490 44490 9351 1401 1683 642 1243 14320 19340325 6113224 0.82870 0.84540 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: 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. 823 148517 149340 5861759 6011099 450555 112639 0 0 364719 394622 416065 450555 1625961 2438942 126441 145927 146199 149340 567907 91180 98656 104016 112639 406491 609737 5047 986 1797 823 8653 5655555 -439321 50000 54646 5111588 5293989 92635 739072 403000 67141 5655555 4763517 58749 525868 54145 5293989 5061299 29940 93294 202000 32428 4950105 4994766 47153 179553 97500 62673 5061299 0.84340 0.15660 0 1 1 156545 128781 27764 155880 54742 101138 118056 77612 40444 169346 INTEREST IN NET ASSETS OF AFFI 5193934 DUE FROM AFFILIATE -8332 5185602 DEFERRED RENT & LEASE INCENTIVE 35378 35378 5507752 16311 16311 5491441 0 5491441 5884844 16311 16311 5868533 0 5868533 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. 1 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 GRANTMAKING 73105 MIDDLE EAST AND NORTH AFRICA 0 0 GRANTMAKING 2000 EUROPE (INCLUDING ICELAND & GREENLAND) 0 0 PROGRAM SERVICE ACTIVITIES PRECLINICAL RESEARCH STUDIES 122260 0 0 0 0 0 0 197365 0 197365 EUROPE/ICELAND/GREENLAND PROGRAMMATIC SUPPORT 10000 WIRE CASH EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH ON TSC 44105 WIRE CASH EUROPE (INCLUDING ICELAND & GREENLAND) RESEARCH ON TSC 19000 WIRE CASH 1 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. WALKS 940123 880123 60000 41943 18695 4575 4251 COMEDY FOR A CURE 264046 251435 12611 7 14007 32181 1500 11 430646 427129 3517 5255 973 1639 943 16 1634815 1558687 76128 47205 33675 38395 6694 16 125985 -49857 1 BRIGHAM & WOMAN'S HOSPITAL 75 ST FRANCIS STREET BOSTON MA 02115 042312909 501 (C)(3) 143750 RESEARCH GRANTS UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER 5323 HARRY HINES BLVD DALLAS TX 75287 756002868 501 (C)(3) 75000 RESEARCH GRANTS UT HEALTH SCIENCE CENTER AT HOUSTON 7000 FANNIN UCT 1000 HOUSTON TX 77030 741761309 501 (C)(3) 10313 RESEARCH GRANTS WAYNE STATE UNIVERSITY 5057 WOODWARD STE 13202 DETROIT MI 48202 386028429 501 (C)(3) 50000 RESEARCH GRANTS YALE UNIVERSITY POBOX 1873 NEW HAVEN CT 06508 060646973 501 (C)(3) 18522 RESEARCH GRANTS WEILL MEDICAL COLLEGE OF CORNELL UNIVERSITY 575 LEXINGTON AVE 9TH FLOOR NEW YORK NY 10022 131623978 501 (C)(3) 21000 RESEARCH GRANTS PRESIDENT & FELLOWS OF HARVARD COLLEGE POBOX 415649 BOSTON MA 02241 042103580 501 (C)(3) 50000 RESEARCH GRANTS UNIVERSITY OF CINCINNATI UNIVERSITY HALL SUITE ML0222 CINCINNATI OH 45221 316000989 501 (C)(3) 20000 RESEARCH GRANTS 8 0 PART I, LINE 2: 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. X X X X 0 0 0 1 0 1 0 0 0 KARI L ROSBECK PRESIDENT & CEO 169536 3140 17328 321 130 2 5848 108 31043 575 223885 4146 0 0 RICHARD A GOLLUB CONTROLLER & CFO 125314 7999 13267 847 358 23 4382 280 30017 1916 173338 11065 0 0 STEVEN L ROBERDS CHIEF SCIENTIFIC OFFICER 180565 0 19143 0 133 0 6228 0 29013 0 235082 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 5 47237 FMV X SPORTING EVENT TICKETS 1 9170 FMV X FIDGET SPINNERS 1 250 FMV X KEYCHAINS 1 248 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 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. TUBEROUS SCLEROSIS ALLIANCE ENDOWMENT FD 801 ROEDER ROAD STE 750 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 50000 CASH