2014-04-04T11:10:38-05:00 2013-12-31 521855942 TATE & TRYON 2021 L STREET NW WASHINGTON DC 20036 990 2013-01-01 953018799 NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC NATI 3015629890 801 ROEDER ROAD NO 750 SILVER SPRING MD 20910 KARI L ROSBECK PRESIDENT AND CEO 3015629890 2014-04-04 1 ELIZABETH W HELLER P00397829 2022932200 2013 2015-11-30 17:44:51Z TUBEROUS SCLEROSIS ALLIANCE KARI L ROSBECK 801 ROEDER ROAD NO 750 SILVER SPRING MD 20910 4385212 0 X WWW.TSALLIANCE.ORG X 1975 CA THE NATIONAL TUBEROUS SCLEROSIS ASSOCIATION, D/B/A TUBEROUS SCLEROSIS ALLIANCE, IS DEDICATED TO FINDING A CURE FOR TUBEROUS SCLEROSIS WHILE IMPROVING THE LIVES OF THOSE AFFECTED. 25 25 15 2000 0 0 3199643 3239048 202786 983127 9669 13800 -67798 -84729 3344300 4151246 839957 903892 0 0 1253071 1438637 16500 16500 632282 1379176 1726952 3488704 4085981 -144404 65265 7963191 9171713 119036 724870 7844155 8446843 X THE TS ALLIANCE IS DEDICATED TO FINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THE AFFECTED. 0 0 2037048 903892 1825634 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. THE TS ALLIANCE HAS FUNDED MORE THAN $17.4 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 THAT IS PROPOSED BY RESEARCHERS AND ALIGNED WITH THE RESEARCH PRIORITIES OF THE TS ALLIANCE. COLLABORATIONS BETWEEN BASIC AND CLINICAL RESEARCHERS ARE ENCOURAGED AND FOSTERED, FOR EXAMPLE, BY BIENNIAL INTERNATIONAL TSC RESEARCH CONFERENCES. THROUGH THE TS ALLIANCE RESEARCH GRANTS PROGRAM, APPLICATIONS CAN BE SUBMITTED FOR POSTDOCTORAL FELLOWSHIPS, RESEARCH GRANTS, ROTHBERG COURAGE AWARDS, AND THE DRUG SCREENING PROGRAM. GRANTS ARE REVIEWED IN A THREE-STEP PROCESS: (1) ALL GRANT APPLICATIONS ARE REVIEWED BY A COMMITTEE COMPRISED OF SCIENTISTS KNOWLEDGEABLE ABOUT THE TOPIC AREA FOR SCIENTIFIC MERIT AND OF ADULTS AFFECTED BY TSC FOR POTENTIAL IMPACT ON THE LIVES OF THOSE AFFECTED BY TSC, (2) THE SCIENCE AND MEDICAL COMMITTEE OF THE BOARD OF DIRECTORS EVALUATES THE GRANT REVIEW 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.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 2013, 1,300 PEOPLE WITH TUBEROUS SCLEROSIS COMPLEX WERE ENROLLED IN THE PROJECT FROM AMONG 15 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 2013, THE TS ALLIANCE INVESTED $484,160 IN THE TSC DATABASE. THIS REPRESENTS A CONSIDERABLE INCREASE OVER PRIOR YEARS FOR TWO REASONS. FIRST, THE TS ALLIANCE BEGAN DEVELOPMENT AND TESTING OF A NEW DATABASE PLATFORM THAT IS BETTER SUITED FOR RESEARCH QUERIES, CAN ACCEPT PATIENT-REPORTED DATA ON QUALITY OF LIFE, AND WILL BE MORE COST EFFECTIVE TO USE. SECOND, MORE FUNDING WAS PROVIDED TO THE 15 PARTICIPATING SITES TO INCREASE ENROLLMENT AND COMPLETENESS OF RECORDS PRIOR TO MOVING TO THE NEW PLATFORM. THE TS ALLIANCE RECEIVED A ONE-YEAR $70,000 GRANT AWARD FROM THE PEDIATRIC EPILEPSY RESEARCH FOUNDATION IN FALL 2013, WHICH WILL UNDERWRITE A PORTION OF THE OPERATIONAL EXPENSES OF THE TSC DATABASE THROUGH 2014. A CONTRACT WITH NOVARTIS WAS EXECUTED IN NOVEMBER 2012 TO PROVIDE TS ALLIANCE WITH FUNDING TO ENHANCE AND GROW THE TSC DATABASE THROUGH 2015. THE TS ALLIANCE HOSTED THE 2013 INTERNATIONAL RESEARCH CONFERENCE ON TSC AND RELATED DISORDERS: MOLECULES TO MEDICINES ON JUNE 20-23, 2013, AT THE OMNI SHOREHAM HOTEL IN WASHINGTON, DC. NEARLY 200 RESEARCHERS, CLINICIANS AND OTHER CONSTITUENTS ATTENDED THIS SUCCESSFUL AND PRODUCTIVE CONFERENCE. THE CONFERENCE'S OPENING SESSION REVEALED NEW DATA ON MULTIPLE CELLULAR MECHANISMS THAT IMPACT MTOR ACTIVITY, WHICH IS ELEVATED IN TSC. SOME OF THESE MECHANISMS ARE ASSOCIATED WITH DRUGS BEING TESTED IN ANIMAL MODELS OF TSC. THE CONFERENCE'S KEYNOTE ADDRESS BY DR. MUSTAFA SAHIN OF BOSTON CHILDREN'S HOSPITAL DISCUSSED HOW ALTERATIONS IN CONNECTIONS BETWEEN NEURONS IN THE BRAIN OF INDIVIDUALS WITH TSC MAY BE RESPONSIBLE FOR THE NEUROLOGIC AND NEUROPSYCHIATRIC PROBLEMS THAT SO FREQUENTLY OCCUR IN TSC. A SESSION ON CLINICAL STUDIES COVERED LESSONS LEARNED FROM PAST CLINICAL TRIALS IN TSC AND IDEAS FOR FUTURE CLINICAL TRIALS IN TSC. THE SESSION ON GENETICS REVEALED THAT NO THIRD GENE HAS YET BEEN IDENTIFIED TO CAUSE TSC AND THAT MANY INDIVIDUALS IN WHOM MUTATIONS COULD NOT BE IDENTIFIED ARE NOW BEING FOUND TO BE MOSAIC FOR TSC1 OR TSC2 MUTATIONS, MEANING ONLY SOME OF THOSE PERSONS' CELLS CARRY MUTATIONS. THE FINAL TWO SESSIONS OF THE CONFERENCE DISCUSSED BOTH ANIMAL MODELS AND CLINICAL DATA FROM WHICH WE ARE LEARNING MORE ABOUT THE TSC DISEASE PROCESS AND HOW WE MIGHT IDENTIFY NEW TREATMENTS OR HOW WE MIGHT MORE EFFECTIVELY DELIVER CARE USING EXISTING TREATMENTS. WORKING GROUPS HELD DURING THE CONFERENCE ENABLED ATTENDEES FROM ALL DIFFERENT BACKGROUNDS TO TACKLE SPECIFIC QUESTIONS OR PROBLEMS, INCLUDING HOW TO ACHIEVE THE BEST COMPREHENSIVE CLINICAL CARE FOR INDIVIDUALS WITH TSC AND HOW TO UTILIZE AND DEVELOP A BIOBANK OF TISSUE AND BLOOD OR URINE SAMPLES FROM PEOPLE WITH TSC. A TOTAL OF 16 RESEARCH AWARDS WERE FUNDED DURING 2013 FOR $903,892. THE TS ALLIANCE ROTHBERG COURAGE AWARD FOR RESEARCH CONTINUED SUPPORTING THREE ONGOING PROJECTS: (1) THE DEVELOPMENT OF SEIZURE TRACKER AS AN EPILEPSY CLINICAL TRIAL TOOL; (2) THE TSC NEUROCOGNITIVE TRIAL, A CLINICAL STUDY OF EVEROLIMUS EFFECTS ON NEUROCOGNITION AT CHILDREN'S HOSPITAL BOSTON AND CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER; (3) A STUDY BY DR. ELIZABETH HENSKE (BRIGHAM & WOMEN'S HOSPITAL) TO DETERMINE WHETHER INHIBITION OF AUTOPHAGY MIGHT KILL ABNORMALLY GROWING CELLS IN TSC. THE TS ALLIANCE CONTINUED TO SUPPORT NINE RESEARCH GRANTS AWARDED IN PREVIOUS YEARS. ADDITIONALLY, FIVE NEW RESEARCH AWARDS WERE ANNOUNCED THIS YEAR; FUNDING BEGAN IN 2013 FOR THREE OF THESE, AND FUNDING OF THE OTHERS WILL BEGIN IN 2014. THE THREE NEWLY FUNDED AWARDS BEGINNING IN 2013 WERE TO (1) DR. CARMEN PRIOLO (BRIGHAM AND WOMEN'S HOSPITAL) TO STUDY POTENTIAL BIOMARKERS IN BLOOD TO ASSESS PROGRESSION OF LAM, (2) DR. REBECCA IHRIE (VANDERBILT UNIVERSITY) TO STUDY THE CELLULAR ORIGIN OF SUBEPENDYMAL GIANT CELL ASTROCYTOMAS IN TSC TO DETERMINE NEW APPROACHES TO TREATMENT, AND (3) DR. DAVID KWIATKOWSKI (BRIGHAM AND WOMEN'S HOSPITAL) TO COLLECT AND ANALYZE BIOSAMPLES FROM A NEW EUROPEAN CLINICAL TRIAL TO TREAT OR PREVENT INFANTILE SPASMS IN TSC. AMONG THE NINE ONGOING GRANTS, THE TSC DRUG SCREENING PROGRAM CONTINUED SPONSORING RESEARCH BY DR. JEANNIE LI (HARVARD UNIVERSITY) TO IDENTIFY NEW WAYS OF TREATING TSC BY BLOCKING THE ABILITY OF CELLS WITH TSC1/TSC2 LOSS TO USE SPECIAL NUTRIENT SOURCES AND, THEREFORE, SELECTIVELY KILL THESE CELLS WITHOUT KILLING NORMAL CELLS. THE DRUG SCREENING PROGRAM ALSO CONTINUED TO SUPPORT PROJECTS TESTING DRUGS FOR THEIR POTENTIAL TO INFLUENCE NEUROLOGIC MANIFESTATIONS OF TSC. DR. MUSTAFA SAHIN (CHILDREN'S HOSPITAL BOSTON) IS WORKING TO IDENTIFY COMPOUNDS THAT REVERSE CHANGES INDUCED BY LOSS OF TSC2 IN CULTURED NEURONS AND TO UNDERSTAND THEIR IMPACT ON LEARNING AND BEHAVIORAL DEFECTS IN MICE DEFICIENT IN TSC1 OR TSC2. DR. SEOK-HYUNG KIM (VANDERBILT UNIVERSITY) IS SCREENING COMPOUNDS TO REVERSE ABNORMAL NEURONAL PHENOTYPES IN TSC2 MUTANT ZEBRAFISH.THE FINAL RESEARCH AWARD CONSISTED OF $240,252 TO HELP SUPPORT THE TSC CLINICAL RESEARCH CONSORTIUM AND LEVERAGE NIH FUNDING. THE FIVE CLINICS COMPRISING THIS CONSORTIUM RECEIVED NIH GRANTS TO CONDUCT TWO CLINICAL STUDIES INITIATED IN 2013 THAT ARE ENROLLING PARTICIPANTS AHEAD OF SCHEDULE. THESE TWO CLINICAL STUDIES WILL (1) DETERMINE WHAT EARLY SIGNS OR TESTS CAN IDENTIFY INFANTS WITH TSC AT HIGHEST RISK OF DEVELOPING AUTISM BY AGE THREE, AND (2) MEASURE THE ABILITY OF EEG AND BRAIN IMAGING TO ASSESS THE RISK OF NEWLY DIAGNOSED INFANTS WITH TSC TO DEVELOP INFANTILE SPASMS. THE BIOMARKERS RESULTING FROM STUDIES WILL HAVE A MAJOR IMPACT ON OUR ABILITY TO INTERVENE VERY EARLY TO PREVENT SOME OF THE MOST DEVASTATING MANIFESTATIONS OF TSC. ADDITIONALLY, THE COORDINATED WORK TO EXECUTE BOTH OF THESE STUDIES WILL DEVELOP INFRASTRUCTURE AND PROCESSES TO FORM THE BASIS OF AN ONGOING AND GROWING TSC CLINICAL RESEARCH NETWORK. AS TRANSLATIONAL RESEARCH IN TSC PRODUCES ADDITIONAL IDEAS FOR CLINICAL STUDIES, THE EFFICIENT INITIATION AND CONDUCT OF FUTURE CLINICAL TRIALS WILL BENEFIT FROM HAVING THIS INFRASTRUCTURE IN PLACE TO ENABLE INVESTIGATORS TO QUICKLY AND AFFORDABLY EXECUTE STUDIES. THE TS ALLIANCE'S CHIEF SCIENTIFIC OFFICER IS ON THE LEADERSHIP TEAM OF THE CONSORTIUM. 714679 118000 FAMILY SERVICES DEVELOPS PROGRAMS AND SERVICES THAT PROVIDE INDIVIDUALS WITH TSC DIRECT ACCESS TO THE INFORMATION, RESOURCES, AND SPECIALISTS EXPERIENCED IN THE DIAGNOSIS, TREATMENT AND MANAGEMENT OF TSC. THE OUTREACH DEPARTMENT PROVIDED SUPPORT AND RESOURCES TO 2,272 INDIVIDUALS AND FAMILIES DEALING WITH TSC. THE DIRECTOR OF ADVOCACY AND EDUCATION ATTENDED 26 INDIVIDUAL EDUCATION PROGRAM (IEP) MEETINGS IN PERSON, THROUGH SKYPE, AND VIA CONFERENCE CALLS TO SUPPORT FAMILIES IN GETTING EDUCATIONAL SERVICES FOR THEIR CHILDREN THROUGHOUT THE COUNTRY. IN 2013 THERE WERE THERE ARE 23 EDUCATIONAL LIAISON VOLUNTEERS, WORKING IN 23 STATES, TO CONNECT FAMILIES TO FREE EDUCATIONAL ADVOCACY TRAININGS IN COLLABORATION WITH THE STATES' PARENT TRAINING AND INFORMATION CENTERS. OVER THE PAST YEAR THERE HAVE BEEN MORE THAN 1,000 FREE PARENT TRAININGS AND WEBINARS ON EDUCATIONAL ADVOCACY OFFERED TO FAMILIES DEALING WITH EDUCATIONAL ISSUES FOR THEIR CHILDREN. A NEW EDUCATIONAL ADVOCACY PUBLICATION WAS DEVELOPED TO HELP YOUNG ADULTS SELF-ADVOCATE AT THE COLLEGE LEVEL "WHAT COLLEGE PROFESSORS NEED TO KNOW ABOUT TSC."THERE WERE 9 ADULT TOPIC CALLS HELD ON TOPICS SPECIFIC TO INDEPENDENT AND SEMI-INDEPENDENT ADULTS WITH TSC. A PILOT ADULT TOPIC CALL WAS HELD FOR PARENTS OF DEPENDENT ADULTS AND A DEPENDENT ADULT TASK FORCE DEVELOPED TO ADDRESS THE NEEDS OF THIS POPULATION. THE ADULT REGIONAL COORDINATOR PROGRAM DEVELOPED TO SUPPORT ADULTS ONE ON ONE SUPPORTED 1,077 ADULTS WITH TSC THROUGHOUT THE COUNTRY. FINALLY, THE TS ALLIANCE ONLINE SOCIAL NETWORK THROUGH "INSPIRE" HELPS TO CONNECT INDIVIDUALS AND FAMILIES DEALING WITH TSC AND GET SUPPORT FROM EACH OTHER'S EXPERIENCE. PRESENTLY THE TSC POPULATION THROUGH INSPIRE INCLUDES 2,154 MEMBERS FROM 79 COUNTRIES AS OF DECEMBER 31, 2013. IN ADDITION, THE TSC CLINIC AMBASSADORS PROGRAM SUPPORTED 238 INDIVIDUALS AND FAMILIES ONE ON ONE IN EIGHT TSC CLINICS LOCATED IN MIAMI, FL; CINCINNATI, OH; COLUMBUS, OH; ATLANTA, GA; NASHVILLE, TN; BIRMINGHAM, AL; DENVER, CO, AND DALLAS, TX.THROUGH THE NETWORK OF 32 VOLUNTEER BRANCHES OF THE ORGANIZATION, CALLED COMMUNITY ALLIANCES, LOCAL EDUCATION AND SUPPORT GROUP MEETINGS ARE HELD THROUGHOUT THE COUNTRY. THE TS ALLIANCE HOSTED 20 EDUCATIONAL MEETINGS AND 33 GATHERINGS HELD AT COMMUNITY ALLIANCE LOCATIONS DURING THE FISCAL YEAR 2013. THESE MEETINGS FACILITATED STRONGER CONNECTIONS AND PEERS, RESEARCHERS, AND CLINICIANS IN THE COMMUNITY AND EDUCATED THE TSC COMMUNITY ABOUT CLINICAL TRIALS, RESEARCH AND TREATMENT OPTIONS FOR THOSE LIVING WITH TSC. 196950 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 2013, THE TS ALLIANCE PRODUCED THREE ISSUES OF ITS NATIONAL MAGAZINE, PERSPECTIVE, WHICH IS MAILED TO MORE THAN 13,700 CONSTITUENTS AS WELL AS POSTED ON THE WEBSITE. THE TS ALLIANCE'S WEBSITE INCREASES AWARENESS AND PROVIDES EXTENSIVE EDUCATION THOUGH ITS WEBSITE VIA 950,000 TO 1.2 MILLION HITS MONTHLY FROM AN AVERAGE OF MORE THAN 35,000 UNIQUE VISITORS. THE SITE'S ONLINE MAIL LIST FORM CONTINUES TO CAPTURE 50 OR MORE NEW CONSTITUENTS EVERY MONTH. THE TS ALLIANCE RELIES HEAVILY ON SOCIAL MEDIA TO EDUCATE CONSTITUENTS AND PROMOTE NEW RESOURCES AND EVENTS. ITS FACEBOOK GROUP BOASTS MORE THAN 5,300 MEMBERS, WHILE ITS TWITTER ACCOUNT HAS 800-PLUS FOLLOWERS. THE TS ALLIANCE ALSO PROVIDES PUBLIC EDUCATION THROUGH A SERIES OF REGIONAL TSC CONFERENCES; FOUR WERE HELD IN 2013 INCLUDING GRAND RAPIDS, MI; NEW YORK, NY; BIRMINGHAM, AL; AND KANSAS CITY, MO. TO INCREASE PUBLIC AWARENESS, THE TS ALLIANCE HEAVILY PROMOTED TSC GLOBAL AWARENESS DAY ON MAY 15. THIS YEAR'S EVENT INTRODUCED A DEDICATED WEBSITE - TSCGLOBALDAY.ORG, TO HOUSE A "WHERE IN THE WORLD IS TSC?" SOCIAL MEDIA/PHOTO CAMPAIGN WHICH GARNERED 473 PICTURES FROM 34 COUNTRIES AS WELL AS A HUGE FACEBOOK/TWITTER PUSH. IN ADDITION, THE TS ALLIANCE PRESIDENT & CEO AND ITS CHIEF SCIENTIFIC OFFICER PARTICIPATED IN 10 RADIO INTERVIEWS, WHICH ULTIMATELY AIRED ON 735 STATIONS REACHING MORE THAN 9.7 MILLION LISTENERS. FINALLY, LONG-TIME TS ALLIANCE SUPPORTER AND FAMED ACTRESS JULIANNE MOORE RECORDED A TSC GLOBAL AWARENESS DAY PSA, WHICH WAS PLAYED 1,326 TIMES ON 154 DIFFERENT STATIONS, REACHING 4.9 MILLION. THE TS ALLIANCE ALSO PARTICIPATED IN A MEDIA TOURS IN PARTNERSHIP WITH NOVARTIS AND THE SPECIAL OLYMPICS, SHARING THE STORY OF TWO TSC SPECIAL OLYMPIANS. IN MAY, TS ALLIANCE PRESIDENT AND CEO PARTICIPATED IN 10 INTERNET MEDIA BASED INTERVIEWS WITH KATHY GROVES WHO TALKED ABOUT HER FAMILY, LIFE WITH TSC, AND HER SON RYAN AND HIS PARTICIPATION IN THE SPECIAL OLYMPICS. THE CSO PARTICIPATED IN A RADIO MEDIA TOUR IN NOVEMBER REACHING A TOTAL LISTENERSHIP OF 3,376,000 WITH PLACEMENT ON 17 NETWORKS. THE MEDIA TOUR INCLUDED MANDY AND SCOTT STRIEGEL, WHO ADDRESSED THE FAMILY'S EXPERIENCES LIVING WITH TSC, ESPECIALLY THEIR SON STEVEN'S PARTICIPATION IN THE SPECIAL OLYMPICS. TO HELP EDUCATE PEOPLE WITH TSC, PHYSICIANS AND THE GENERAL PUBLIC, THE TS ALLIANCE PRODUCED AND RELEASED EIGHT NEW EDUCATIONAL VIDEOS IN 2013. 142520 GOVERNMENT RELATIONS FOCUSES ON EDUCATING MEMBERS OF CONGRESS ABOUT TSC TO FURTHER TSC RESEARCH, AWARENESS AND CLINICAL CARE. IN 2013, THE TS ALLIANCE GRASSROOTS VOLUNTEERS CONDUCTED A MARCH ON CAPITOL HILL RESULTING IN 74 MEMBERS OF THE HOUSE OF REPRESENTATIVES SIGNING A LETTER OF SUPPORT CIRCULATED BY REPRESENTATIVE LORETTA SANCHEZ (D-CA) AND 10 SENATORS SIGNING A BIPARTISAN LETTER OF SUPPORT CIRCULATED BY SENATOR RON WYDEN (D-OR) FOR FY14 APPROPRIATIONS. THE US CONGRESS APPROPRIATED $6 MILLION FOR FY14 TO TSC RESEARCH THROUGH THE DEPARTMENT OF DEFENSE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM. THE TSC RESEARCH PROGRAM (TSCRP) ADMINISTERED FROM THE APPROPRIATION IS A COMPETITIVE PEER REVIEW GRANT PROGRAM. ACCORDING TO THE U.S. ARMY MEDICAL RESEARCH AND MATERIAL COMMAND, CDMRP, TUBEROUS SCLEROSIS COMPLEX RESEARCH PROGRAM REPORT "TODAY, THE TSCRP IS ONE OF THE LEADING SOURCES OF EXTRAMURAL TSC RESEARCH FUNDING IN THE UNITED STATES. THE TSCRP FILLS IMPORTANT GAPS IN TSC RESEARCH NOT ADDRESSED BY OTHER FUNDING AGENCIES." A HALLMARK ACHIEVEMENT IS TSCRP-SUPPORTED RESEARCH THAT EXAMINED THE ROLE THAT TSC GENES PLAY IN CELL GROWTH AND PROLIFERATION-SPECIFICALLY IN CONTROLLING THE MAMMALIAN TARGET OF RAPAMYCIN (MTOR) SIGNALING PATHWAY IN CELLS. THIS RESEARCH RAPIDLY LED TO CLINICAL TRIALS, RESULTING IN THE FIRST DRUG APPROVED BY THE FDA SPECIFICALLY FOR TREATMENT OF INDIVIDUALS WITH TSC. RESEARCH DONE THROUGH THIS PROGRAM HAS RECENTLY LED TO ADDITIONAL CLINICAL TRIALS INCLUDING; TESTING A COMBINATION OF TWO DRUGS TO TREAT LYMPHANGIOLEIOMYOMATOSIS (LAM), A LIFE-THREATENING LUNG MANIFESTATION OF TSC FUNDED IN FY2012; A MULTI-SITE CLINICAL TRIAL TESTING THE EFFICACY OF AN EXPERIMENTAL TOPICAL RAPAMYCIN CREAM TO TREAT THE DISFIGURING FACIAL TUMORS, FACIAL ANGIOFIBROMAS, CAUSED BY TSC FUNDED IN FY2010; A CLINICAL RESEARCH NETWORK WAS CREATED TO TEST POTENTIAL NEW THERAPIES, TO VALIDATE BIOMARKERS, AND TO LEARN THE NATURAL HISTORY OF LEADING TO A CLINICAL TRIAL FUNDED IN FY2012. BUILDING UPON FY2010-FUNDED RESEARCH ON GLUTAMATE RECEPTORS (MGLUR5), SEVERAL COMPANIES ARE NOW LOOKING DEVELOPING DRUGS TO THE LINK BETWEEN COGNITIVE IMPAIRMENTS IN TSC TO AUTISM, ANXIETY, AND OTHER MENTAL DISORDERS. THE TSCRP HAS ALSO FUNDED RESEARCH TO DEVELOP ANIMAL MODELS OF TSC THAT HAVE SEIZURES, ENABLING A BETTER UNDERSTANDING OF THE ETIOLOGY OF TSC. IN 2013 A CLINICAL TRIAL BEGAN TO TEST MTOR INHIBITORS TO TREAT EPILEPSY IN INDIVIDUALS WITH TSC. NONE OF THIS PROGRESS WOULD HAVE BEEN POSSIBLE WITHOUT THE CRITICAL SUPPORT PROVIDED THROUGH THE TSCRP.ADDITIONAL GOVERNMENT RELATIONS EFFORTS INCLUDED A CONGRESSIONAL BRIEFING ON CAPITOL HILL TO COMMEMORATE TSC GLOBAL AWARENESS DAY ON MAY 15, 2013. CONGRESSIONAL STAFF AND KEY MEMBERS OF THE TSC RESEARCH AND GRASSROOTS COMMUNITIES ATTENDED THE EVENT. 22826 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 FUNDED THE OPEN-ACCESS PUBLICATION OF TWO PEER-REVIEWED ARTICLES IN THE JOURNAL PEDIATRIC NEUROLOGY TO MAKE AVAILABLE TO HEALTHCARE PROVIDERS WORLDWIDE THE LATEST RECOMMENDATIONS ON THE DIAGNOSIS, SURVEILLANCE, AND MANAGEMENT OF TSC FROM THE 2012 TSC CLINICAL CONSENSUS CONFERENCE. THE TS ALLIANCE ALSO CO-SPONSORED A CONTINUING MEDICAL EDUCATION PROGRAM WITH PEERVIEW INSTITUTE AND THE UNIVERSITY OF FLORIDA THAT IS AVAILABLE FREE TO PHYSICIANS TO EDUCATE THEM ON THE PUBLISHED CONSENSUS RECOMMENDATIONS. ADDITIONALLY, THE TS ALLIANCE WORKED WITH OTHER ADVOCACY GROUPS REPRESENTING RARE EPILEPSY SYNDROMES TO HELP IMPLEMENT SOME OF THE RECOMMENDATIONS FROM AN INSTITUTE OF MEDICINE REPORT ON THE EPILEPSIES, INCLUDING BUILDING THE HERO WEBSITE TO ENABLE INDIVIDUALS WITH EPILEPSY TO LOCATE RELEVANT CLINICAL STUDIES.THE TS ALLIANCE PARTICIPATED IN AND PRESENTED AT SEVERAL PROFESSIONAL MEETINGS INCLUDING: LAM FOUNDATION CONFERENCE; WORLD ORPHAN DRUG CONGRESS; ASSOCIATION OF CLINICAL RESEARCH PROFESSIONALS CONFERENCE; INTERAGENCY COLLABORATIVE TO ADVANCE RESEARCH IN EPILEPSY (ICARE); THE NINDS NONPROFIT FORUM; NORD/DIA ANNUAL CONFERENCE ON RARE DISEASES AND ORPHAN PRODUCTS; PARTNERING FOR CURES; CHILD NEUROLOGY SOCIETY ANNUAL MEETING; AND TSC RESEARCH CONFERENCES IN GERMANY AND NORWAY. IN ADDITION, AT THE AMERICAN EPILEPSY SOCIETY (AES) ANNUAL MEETING THE TS ALLIANCE HOSTED A TSC RECEPTION FOR MORE THAN 50 RESEARCHERS AND PARTICIPATED IN TWO SPECIAL INTEREST GROUP SCIENTIFIC SESSIONS, ONE ON TSC AND ANOTHER ON RESEARCH RESOURCES MADE AVAILABLE BY NON-PROFIT ORGANIZATIONS ADVOCATING FOR RARE DISORDERS THAT INVOLVE EPILEPSY. THE TS ALLIANCE ALSO MANAGES AN ONLINE PORTAL FOR HEALTHCARE PROFESSIONALS CALLED "VEOMED" TO ENCOURAGE INFORMATION EXCHANGE. THERE ARE CURRENTLY 75 PROFESSIONALS USING THIS PORTAL, WHICH ALSO SERVES AS A RESOURCE FOR PROFESSIONALS NOT FAMILIAR WITH TSC SEEKING GUIDANCE FROM PEERS. A MONTHLY ONLINE NEWSLETTER CALLED TSC ALERT IS SENT TO NEARLY 1,000 MEDICAL PROFESSIONALS AND SCIENTISTS. FURTHER, THE DIRECTOR OF ADVOCACY AND EDUCATION HAS ONGOING COLLABORATION WITH NATIONAL EDUCATIONAL NETWORKS, SUCH AS THE ASSOCIATION FOR MIDDLE LEVEL EDUCATION (AMLE). SHE ALSO COLLABORATES WITH PARENT TRAINING INFORMATION CENTERS (PTIS) THROUGHOUT THE COUNTRY. PROVIDING CHILDREN WITH APPROPRIATE EDUCATION IS THE KEY TO INDIVIDUALS HAVING A GOOD QUALITY OF LIFE. 165346 3114023 1 1 0 1 0 0 0 0 0 1 1 0 0 1 0 1 0 1 0 0 1 1 0 1 1 0 0 1 0 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 1 29 0 1 15 1 0 0 0 0 0 1 1 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 MD CA DC ND AK AZ RI PA CO MA NH NY NC OH OR VA CT ME GA NV AR HI IL KS KY TN MI NJ NM UT MN WV OK WY FL AL WA SC WI MS LA TX MO DE ID IN IA X X THE ORGANIZATION 3015629890 801 ROEDER ROAD NO 750 SILVER SPRING MD 20910 MATT BOLGER CHAIR 5.00 X X 0 0 0 KEITH HALL VICE CHAIR 5.00 X X 0 0 0 HENRY SHAPIRO IMMEDIATE PAST CHAIR 5.00 X X 0 0 0 DAVID MICHAELS TREASURER 5.00 1.00 X X 0 0 0 REIKO DONATO SECRETARY 5.00 X X 0 0 0 MARTINA BEBIN BOARD MEMBER 2.00 X 0 0 0 DAVID PARKES BOARD MEMBER 2.00 X 0 0 0 CELIA MASTBAUM BOARD MEMBER 2.00 X 0 0 0 JULIE BLUM BOARD MEMBER 3.00 X 0 0 0 MARK CARROLL BOARD MEMBER 2.00 X 0 0 0 RITA DIDOMENICO BOARD MEMBER 2.00 1.00 X 0 0 0 PETER CRINO MD PHD BOARD MEMBER 2.00 X 0 0 0 DAVID FITZMAURICE BOARD MEMBER 2.00 X 0 0 0 JENNIFER GLASSMAN BOARD MEMBER 2.00 X 0 0 0 STEVEN GOLDSTEIN BOARD MEMBER 2.00 1.00 X 0 0 0 RON HEFFRON BOARD MEMBER 2.00 X 0 0 0 LINDA JACKSON BOARD MEMBER 2.00 X 0 0 0 LAURA LUBBERS BOARD MEMBER 2.00 X 0 0 0 DEBORA MORITZ BOARD MEMBER 5.00 X 0 0 0 THEODORE MASTROIANNI BOARD MEMBER 2.00 X 0 0 0 ALAN MARSHALL BOARD MEMBER 2.00 X 0 0 0 COURTNEY O'MALLEY BOARD MEMBER 2.00 X 0 0 0 JOHN NICHOLSON BOARD MEMBER 2.00 X 0 0 0 REBECCA ANHANG PRICE BOARD MEMBER 2.00 X 0 0 0 JUDITH SHOULAK BOARD MEMBER 2.00 X 0 0 0 ELIZABETH THIELE MD PHD BOARD MEMBER 2.00 X 0 0 0 KARI L ROSBECK PRESIDENT & CEO 50.00 5.00 X 137053 13705 26627 MARY JANE PERRAUT CHIEF FINANCIAL OFFICER 40.00 5.00 X 107852 13481 10895 STEVEN L ROBERDS CHIEF SCIENTIFIC OFFICER 45.00 X 163642 0 27013 408547 27186 64535 2 0 1 0 0 75476 1410318 197200 1556054 47984 3239048 CONTRACT REVENUE 900099 779327 779327 CONFERENCE REVENUE 900099 203800 203800 983127 13335 13335 124940 124475 465 465 465 18778 1410318 109491 -90713 -90713 OTHER 900099 5984 5984 5984 4151246 983127 0 -70929 855892 855892 48000 48000 512765 303716 67489 141560 736109 436773 96553 202783 21951 12872 2945 6134 77945 45708 10458 21779 89867 52693 12060 25114 18750 1023 17727 32440 32440 102517 102517 16500 16500 60607 32685 12922 15000 271024 138576 60949 71499 97960 39620 55593 2747 83642 120 83402 120 208463 168588 3066 36809 158908 141024 16568 1316 110683 90422 20261 8421 8421 NATURAL HISTORY DATABAS 484160 484160 BANK AND CREDIT CARD FE 50182 0 35130 15052 EQUIPMENT & MAINTENANCE 20593 697 18959 937 ALLOCATIONS 0 156156 -229921 73765 18602 2781 14654 1167 4085981 3114023 339676 632282 X 79936 39968 0 39968 2334967 3054646 492140 248045 336000 162675 86517 326326 4395 0 155998 181502 553970 350469 100412 203501 4452762 4995018 7963191 9171713 117408 230387 1628 494483 119036 724870 X 5255154 5953119 1709557 1614280 879444 879444 7844155 8446843 7963191 9171713 X 65265 21 537401 X X 0 1 X 1 0 X 3221297 1449542 3812563 3199643 3239048 14922093 3221297 1449542 3812563 3199643 3239048 14922093 1461893 13460200 4704 7821 9722 9794 13335 45376 3967 5728 13037 23048 5984 51764 15019233 1517705 0.89620 0.97490 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: INCOME FROM OTHER PROGRAM RELATED ACTIVITIES - 2009 AMOUNT: $ 3,967. 2010 AMOUNT: $ 5,728. 2011 AMOUNT: $ 13,037. 2012 AMOUNT: $ 23,048. 2013 AMOUNT: $ 5,984. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 919 141601 142520 3940692 4083212 354161 88540 0 0 226416 334138 323610 354161 1238325 1857488 74182 163120 141410 142520 521232 56604 83535 80903 88540 309582 464373 7007 7688 16179 919 31793 4457365 42690 718381 197200 26470 4994766 4221150 43996 420983 202000 26764 4457365 4443045 29825 -47583 175000 29137 4221150 3866081 13835 584775 21646 4443045 3750509 13523 312223 210174 3866081 0.78070 0.17610 0.04320 0 1 1 150655 16142 134513 14829 9112 5717 388486 325215 63271 203501 INTEREST IN NET ASSETS OF AFFILIATE 4994766 DUE FROM AFFILIATE 252 4995018 X 4186343 21 35076 35097 4151246 0 4151246 4121056 35076 35076 4085980 0 4085980 PART V, LINE 4: THE ALLIANCE'S ENDOWMENTS CONSIST OF TWO FUNDS ESTABLISHED FOR DIFFERENT PURPOSES. THE ALLIANCE'S ENDOWMENT INCLUDE ONE TRADITIONAL DONOR-RESTRICTED ENDOWMENT FUNDS AND ONE BOARD-DESIGNATED ENDOWMENT FUND. THE BOARD-DESIGNATED ENDOWMENT FUND SOLELY CONSISTS OF THE ENDOWMENT FUND'S UNRESTRICTED NET ASSET BALANCE. PART X, LINE 2: THE ALLIANCE BELIEVES THAT IT HAS APPROPRIATE SUPPORT FOR INCOME TAX POSITIONS TAKEN. THEREFORE, MANAGEMENT HAS NOT IDENTIFIED ANY UNCERTAIN INCOME TAX POSITIONS. GENERALLY, INCOME TAX RETURNS RELATED TO THE CURRENT AND THREE PRIOR YEARS REMAIN OPEN FOR EXAMINATION BY TAXING AUTHORITIES. 1 EUROPE 0 0 GRANTS TO RECIPIENTS RESEARCH AWARDS 48000 0 0 0 0 0 0 48000 0 48000 EUROPE RESEARCH GRANT 48000 CHECK CASH 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 IF THE GRANTEE ORGANIZATION WILL CONTINUE TO RECEIVE FUNDING. A FINAL WRITTEN AND FINANCIAL REPORT IS REQUIRED OF ALL GRANTEES. X 1 BLUE ROOM EVENTS INC 5777 WEST CENTURY BLVD STE 880 LOS ANGELES CA 90045 COMEDY FOR A CURE EVENT 0 237663 16500 221163 237663 16500 221163 MD CA DC ND AK AZ RI PA CO MA NH NY NC OH OR VA CT ME GA NV AR HI IL KS KY TN MI NJ NM UT MN WV OK WY FL AL WA SC WI MS LA TX MO DE ID IN IA WALKS 1032055 1032055 54806 LA COMEDY FOR CURE 237663 222318 15345 41345 2 159378 155945 3433 13340 1429096 1410318 18778 109491 109491 -90713 PART I, LINE 2B: THE TS ALLIANCE DOES NOT CONTRACT WITH ADDITIONAL PROFESSIONAL FUNDRAISERS. 1 BRIGHAM & WOMEN'S HOSPITAL 75 FRANCIS STREET BOSTON MA 02115 042312909 501(C)(3) 240717 CLINICAL TRIALS AND RESEARCH GRANTS VANDERBILT UNIVERSITY MEDICAL CENTER DEPT OF FINANCE DEPT AT 40303 ATLANTA GA 31192 620476822 501(C)(3) 86938 RESEARCH GRANT CHILDREN'S HOSPITAL PO BOX 414413 BOSTON MA 02241 042774441 501(C)(3) 122567 RESEARCH GRANT MASSACHUSETTS GENERAL HOSPITAL PO BOX 414876 BOSTON MA 02241 042697983 501(C)(3) 33000 RESEARCH GRANT CINCINNATI CHILDREN'S HOSPITAL 3333 BURNET AVE ML 7030 CINCINNATI OH 452293039 310833936 501(C)(3) 66000 RESEARCH GRANT HARVARD UNIVERSITY PO BOX 415649 BOSTON MA 022415649 042103580 501(C)(3) 66000 RESEARCH GRANT 6 0 PART I, LINE 2: THE TS ALLIANCE HAS FUNDED MORE THAN $17.4 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: - PREDOCTORAL AWARDS - POSTDOCTORAL & CLINICAL FELLOWSHIPS - TSC INNOVATOR AWARDS (PREVIOUSLY CALLED JR. AND SR. INVESTIGATOR AWARDS) - TSC WORKSHOP/CONFERENCE GRANT AWARDS - TSC SUPPLEMENTAL FUNDING AWARDS - ROTHBERG COURAGE AWARD - DRUG SCREENING AWARD - CLINICAL RESEARCH NETWORK FORM 990, SCHEDULE I, LINE 2: GRANTS ARE REVIEWED IN A THREE-STEP PROCESS: - A GRANT REVIEW COMMITTEE COMPOSED OF INDIVIDUALS KNOWLEDGEABLE ABOUT THE CLINICAL AND BASIC COMPONENTS OF TSC, REVIEW ALL GRANT APPLICATIONS FOR SCIENTIFIC MERIT, RELEVANCY TO THE FUNDING PRIORITIES OF THE ORGANIZATION AND WITH A FOCUS ON UNDERSTANDING THE MECHANISMS OF TSC AND/OR THE DEVELOPMENT OF TREATMENTS AND THERAPIES FOR THE MANIFESTATIONS OF THE DISEASE. - THE SCIENCE AND MEDICAL COMMITTEE OF THE BOARD OF DIRECTORS THEN REVIEW THE RECOMMENDATIONS TO THE BOARD OF DIRECTORS. - THE BOARD OF DIRECTORS THEN REVIEWS THE RECOMMENDATIONS OF THE SCIENCE AND MEDICAL COMMITTEE AND MAKES FINAL APPROVAL FOR THE FUNDING OF GRANT APPLICATIONS. X X X X X 0 0 0 1 0 0 0 0 0 KARI L ROSBECK PRESIDENT & CEO 137053 13705 0 0 0 0 4112 411 28045 2804 169210 16920 0 0 STEVEN L ROBERDS CHIEF SCIENTIFIC OFFICER 163642 0 0 0 0 0 4909 0 23958 0 192509 0 0 0 PART I, LINE 5 KARI LUTHER ROSBECK, PRESIDENT AND CEO, MARY JANE PERRAUT, CFO, AND STEVE ROBERDS, CSO, ALL HAVE INCENTIVE COMPENSATION EQUAL TO A PERCENTAGE OF THEIR SALARY BASED ON KEY PERFORMANCE OBJECTIVES AS ESTABLISHED BY THE COMPENSATION COMMITTEE. FORM 990, SCHEDULE J: KARI LUTHER ROSBECK, PRESIDENT & CEO AND MARY JANE PERRAUT, CFO, ARE EMPLOYEES OF TUBEROUS SCLEROSIS ALLIANCE AND ARE COMPENSATED THROUGH TS ALLIANCE. MS. ROSBECK AND MS. PERRAUT SERVE THE ENDOWMENT WITHOUT COMPENSATION. X SPECIAL EVENT 9 47984 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. AS SUCH, MEMBERS HAVE A PROFOUND IMPACT ON THE FUTURE OF THE TS ALLIANCE AND ALL THOSE LIVING WITH TSC. MEMBERSHIP GIVES YOU AN IMPORTANT VOICE AND YOUR INVOLVEMENT AS A TS ALLIANCE MEMBER IS IMPORTANT TO US. THE TS ALLIANCE MEMBERSHIP PROGRAM IS COMPOSED OF SEVERAL LEVELS DESIGNED TO GIVE YOU A CHOICE IN HOW YOU PARTICIPATE. WHETHER YOU CHOOSE THE COMPLIMENTARY BASIC MEMBERSHIP OR THE GOLD LEVEL, BEING A MEMBER MEANS BEING A PART OF OUR UNIQUE AND VITAL COMMUNITY. BECAUSE OF ALLIES LIKE YOU, WHOSE FINANCIAL SUPPORT IS VITAL, THE TS ALLIANCE HAS BEEN ABLE TO MAKE QUANTUM LEAPS FORWARD. FORM 990, PART VI, SECTION B, LINE 11 THE FORM 990 IS REVIEWED, IN DETAIL, BY THE BOARD OF DIRECTORS AUDIT AND FINANCE COMMITTEES. RECOMMENDATIONS ARE MADE BY THE COMMITTEE MEMBERS FOR ANY CHANGES/EDITS/ADDITIONS. AFTER THOSE HAVE BEEN INCORPORATED BOTH COMMITTEES VOTE WHETHER TO APPROVE AND THEN FORWARD THE 990 TO THE EXECUTIVE COMMITTEE. THE EXECUTIVE COMMITTEE PERFORMS THE FINAL REVIEW AND THEN VOTES WHETHER TO APPROVE ON BEHALF OF THE BOARD OF DIRECTORS. A COPY OF THE APPROVED 990 IS SHARED WITH THE ENTIRE BOARD. FORM 990, PART VI, SECTION B, LINE 12C ANNUALLY EACH MEMBER OF THE BOARD OF DIRECTORS WILL RECEIVE NOTICE OF THE ORGANIZATION'S CONFLICT OF INTEREST STATEMENT. EACH MEMBER WILL BE PROVIDED WITH A STATEMENT TO MAKE DISCLOSURE OF ANY POTENTIAL CONFLICT OF INTEREST. IF DURING THE COURSE OF THE YEAR A POTENTIAL CONFLICT OF INTEREST ARISES THAT HAS NOT PREVIOUSLY BEEN DISCLOSED, THE BOARD MEMBERS WILL MAKE WRITTEN NOTICE OF A POTENTIAL CONFLICT OF INTEREST AND RECUSE HIMSELF OR HERSELF FROM ANY DISCUSSIONS AND VOTES IN CONNECTION WITH THE ISSUE IDENTIFIED. ANY TIME A MEMBERS IS RECUSED FROM DISCUSSION ON AN ISSUE, THE MINUTES OF COMMITTEE MEETING AND BOARD MEETING WILL DULY RECORD SUCH ACTIONS. FOR FISCAL YEAR 2013: THE FOLLOWING CONFLICTS OF INTEREST WERE DISCLOSED: BOARD MEMBER ELIZABETH THIELE, MD, PHD, IS EMPLOYED AT MASSACHUSETTS GENERAL HOSPITAL, WHICH RECEIVED A $38,624 GRANT FOR 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 STAFF EXECUTIVE OFFICER, THE CHIEF FINANCIAL OFFICER, AND ANY EMPLOYEE APPEARING ON THE FORM 990, IN ACCORDANCE WITH THE TUBEROUS SCLEROSIS ALLIANCE BYLAWS. SUCH REVIEW AND APPROVAL OCCURS INITIALLY UPON HIRING, UPON ANNUAL REVIEWS AND WHENEVER MODIFIED. THE ORGANIZATION'S EXECUTIVE REMUNERATION HAS BEEN STRUCTURED TO ENSURE THAT IT: IS REASONABLE; PROVIDES A COMPETITIVE COMPENSATION PROGRAM TO RETAIN, ATTRACT AND REWARD KEY EMPLOYEES AND ACHIEVES CLEAR ALIGNMENT BETWEEN TOTAL REMUNERATION AND DELIVERED BUSINESS AND PERSONAL PERFORMANCE OVER THE SHORT AND LONG-TERMS. THE COMPENSATION IS REVIEWED BY THE COMPENSATION COMMITTEE TO ENSURE: - COMPARABILITY, - PROPER REVIEW, AND - SUBSTANTIATION IN SETTING THE COMPENSATION. FORM 990, PART VI, SECTION C, LINE 19 ALL GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY AND FINANCIAL STATEMENTS ARE AVAILABLE UPON WRITTEN REQUEST. FORM 990, PART XI, LINE 9: CHANGE IN INTEREST IN AFFILIATE 537,401. FORM 990, PART XI, LINE 2C THE AUDIT REVIEW PROCESS HAS REMAIN UNCHANGED FROM THE PRIOR YEAR. TUBEROUS SCLEROSIS ALLIANCE ENDOWMENT FUND 801 ROEDER ROAD 750 SILVER SPRING MD 20910 521926919 TO RECEIVE GIFTS THAT WILL BE INVESTED TO GENERATE PERMANENT INCOME FOR TSA MD 501(C)(3) 509(A)(3) NATIONAL TUBEROUS SCLEROSIS ASSOCIATION (TSA) 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 197200 CASH