2013-04-22T10:14:55-05:00 2012-12-31 521855942 TATE & TRYON 2021 L STREET NW WASHINGTON DC 20036 990 2012-01-01 953018799 NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC NATI 3015629890 801 ROEDER ROAD NO 750 SILVER SPRING MD 20910 KARI L ROSBECK 3015629890 2013-04-22 1 SUBRINA L WOOD P00365899 2022932200 2012 2016-03-07 17:11:31Z TUBEROUS SCLEROSIS ALLIANCE KARI L ROSBECK 801 ROEDER ROAD NO 750 SILVER SPRING MD 20910 3454243 0 X WWW.TSALLIANCE.ORG X 1975 CA THE NATIONAL TUBEROUS SCLEROSIS ASSOCIATION DBA TUBEROUS SCLEROSIS ALLIANCE IS DEDICATED TO FINDING A CURE FOR TUBEROUS SCLEROSIS WHILE IMPROVING THE LIVES OF THOSE AFFECTED. 26 25 16 2000 0 0 3875096 3199643 212084 202786 9439 9669 -131202 -67798 3965417 3344300 1174276 839957 0 0 1122866 1253071 16500 16500 543550 1320882 1379176 3634524 3488704 330893 -144404 7974678 7963191 222313 119036 7752365 7844155 X THE TS ALLIANCE IS DEDICATED TO FINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THE AFFECTED. 0 0 1046940 839957 202286 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 $16.5 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 GRANT REVIEW 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 IDENTIFIES SPECIFIC CORRELATIONS BETWEEN TSC GENE MUTATIONS AND THE IMPACT OF THE DISEASE ON A PERSON'S HEALTH OVER THEIR LIFETIME. AS OF DECEMBER 2012, 1,175 PEOPLE WITH TUBEROUS SCLEROSIS COMPLEX WERE ENROLLED IN THE PROJECT FROM AMONG 15 U.S.-BASED SITES AND ONE INTERNATIONAL SITE. 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 2012, THE TS ALLIANCE INVESTED $179,725 IN THE TSC DATABASE. THE TS ALLIANCE RECEIVED THE SECOND HALF OF A TWO-YEAR $200,000 GRANT AWARD FROM THE PEDIATRIC EPILEPSY RESEARCH FOUNDATION IN FALL 2012, WHICH WILL UNDERWRITE A PORTION OF THE OPERATIONAL EXPENSES OF THE TSC DATABASE THROUGH 2013. 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 2012 TSC CLINICAL CONSENSUS CONFERENCE TO UPDATE CONSENSUS RECOMMENDATIONS FOR THE DIAGNOSIS, SURVEILLANCE, AND MANAGEMENT OF TSC. THE PRIOR GUIDELINES WERE BASED ON A 1998 CONSENSUS CONFERENCE, AND THE TSC FIELD HAS MADE TREMENDOUS ADVANCEMENTS IN THE MEANTIME. APPROXIMATELY 80 EXPERTS FROM 14 COUNTRIES PARTICIPATED IN THIS EFFORT TO UPDATE RECOMMENDATIONS AROUND ALL ASPECTS OF TSC: BRAIN TUMORS, DERMATOLOGY AND DENTAL, EPILEPSY, GENETICS, NEUROPSYCHIATRY, PULMONARY, RENAL, AND A COLLECTION OF ADDITIONAL MANIFESTATIONS INCLUDING CARDIAC, ENDOCRINE, GASTROINTESTINAL, AND RETINAL. INDEED, CONSENSUS WAS REACHED DURING THE INTENSE DAY-AND-A-HALF MEETING BASED ON EVALUATION OF DATA IN THE SCIENTIFIC LITERATURE AND EXPERT OPINION. THE TS ALLIANCE WILL FINANCIALLY SUPPORT OPEN-ACCESS PUBLICATION OF PEER-REVIEWED ARTICLES IN MEDICAL JOURNALS TO DESCRIBE THESE GUIDELINES SO THAT THEY ARE FREELY AVAILABLE TO ANYONE AROUND THE WORLD.A TOTAL OF 18 RESEARCH AWARDS WERE FUNDED IN 2012 FOR $839,957. THE TS ALLIANCE ROTHBERG COURAGE AWARD FOR RESEARCH CONTINUED SUPPORTING FIVE 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) WORK BY DR. HOPE NORTHRUP (UNIVERSITY OF TEXAS AT HOUSTON) TO IDENTIFY ADDITIONAL TSC GENES, (4) WORK BY DR. JOHN BISSLER (CINCINNATI CHILDREN'S HOSPITAL AND MEDICAL CENTER) TO DEVELOP MRI-GUIDED HIGH-INTENSITY FOCUSED ULTRASOUND TO TREAT KIDNEY OR LUNG LESIONS; AND (5) 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 11 RESEARCH GRANTS AWARDED IN PREVIOUS YEARS. ADDITIONALLY, A NEW POSTDOCTORAL RESEARCH GRANT WAS INITIATED THIS YEAR TO SUPPORT A YOUNG SCIENTIST WORKING ON TSC RESEARCH. DR. JEANNIE LI (HARVARD UNIVERSITY) WAS AWARDED A POSTDOCTORAL FELLOWSHIP IN LATE 2012 THAT INVOLVES DRUG SCREENING, WHICH WILL BE INITIATED IN EARLY 2013. HER GOAL IS 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 TSC DRUG SCREENING PROGRAM CONTINUED SPONSORING RESEARCH IN DR. ARISTOTELIS ASTRINIDIS' LABORATORY (DREXEL UNIVERSITY) TOWARD FINDING FDA-APPROVED ONCOLOGY DRUGS THAT WILL STOP TUMOR CELL GROWTH IN TSC. THE PROGRAM ALSO CONTINUED FUNDING THE WORK OF DR. JOHN FRANGIONI (BETH ISRAEL DEACONESS HOSPITAL), WHO HAS DEVELOPED A NEW SYSTEM FOR IMAGING OF TUMORS IN LIVE MICE AND HAS SET UP A HIGH-THROUGHPUT SCREEN USING CELLS IN CULTURE IN ORDER TO PRE-SCREEN POTENTIAL DRUGS AND COMPOUNDS PRIOR TO TESTING IN MICE. 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 TS ALLIANCE INVESTED $112,500 TO SUPPORT A NEW TSC CLINICAL RESEARCH CONSORTIUM. THE FIVE CLINICS COMPRISING THIS CONSORTIUM RECEIVED NIH GRANTS TO CONDUCT TWO CLINICAL STUDIES OVER THE NEXT FIVE YEARS. 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. 493457 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. THROUGH THE NETWORK OF 32 VOLUNTEER BRANCHES OF THE ORGANIZATION, CALLED COMMUNITY ALLIANCES, LOCAL EDUCATIONAL AND SUPPORT GROUP MEETINGS ARE HELD THROUGHOUT THE COUNTRY. THE TS ALLIANCE HOSTED 12 EDUCATIONAL MEETINGS AND 20 GATHERINGS HELD AT COMMUNITY ALLIANCE LOCATIONS DURING THE FISCAL YEAR 2012. THESE MEETINGS FACILITATED STRONGER CONNECTIONS WITH PEERS, RESEARCHERS, AND CLINICIANS IN THE COMMUNITY AND EDUCATED THE TSC COMMUNITY ABOUT CLINICAL TRIALS, RESEARCH AND TREATMENT OPTIONS FOR THOSE LIVING WITH TSC. THE DEPARTMENT OF ADVOCACY AND EDUCATION SUPPORTS FAMILIES AND INDIVIDUALS FROM ALL OVER THE UNITED STATES BY PROVIDING SUPPORT AND INFORMATION INCLUDING DIRECT DURING ONE-ON-ONE MEETINGS. IN ADDITION, VOLUNTEER CLINIC AMBASSADORS SUPPORTED OVER 153 INDIVIDUALS AT TSC CLINICS IN MIAMI, FL; CINCINNATI, OH; COLUMBUS, OH; ATLANTA, GA; NASHVILLE, TN; BIRMINGHAM, AL; AND DENVER, CO.THE DIRECTOR OF ADVOCACY AND EDUCATION ATTENDS INDIVIDUAL EDUCATION PROGRAM (IEP) MEETINGS IN PERSON, THROUGH SKYPE, AND VIA CONFERENCE CALLS TO SUPPORT FAMILIES IN GETTING EDUCATIONAL SERVICES FOR THEIR CHILDREN. THERE ARE 18 ADVOCATE LIAISON VOLUNTEERS, WORKING IN 18 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 1,300 FREE PARENT TRAININGS AND WEBINARS ON EDUCATIONAL ADVOCACY OFFERED TO FAMILIES DEALING WITH EDUCATIONAL ISSUES FOR THEIR CHILDREN. THERE WERE ALSO 4 EDUCATIONAL SITUATION VIDEOS DEVELOPED AND PLACED ON THE TS ALLIANCE WEBSITE TO SUPPORT PARENTS IN GETTING AN APPROPRIATE EDUCATION FOR THEIR CHILDREN. THERE WERE 30 ONLINE CHATS HELD FOR SIBLINGS AGES 8-13, 14-18, AND ADULTS TO SUPPORT ISSUES SIBLINGS FACE ON A DAILY BASIS HAVING A BROTHER OR SISTER WITH TSC. A NEW SIBLING FACEBOOK PAGE WAS DEVELOPED TO BETTER SERVE THIS POPULATION. THE DIRECTOR OF EDUCATION AND ADVOCACY ALSO FACILITATES THE ADULT TASK FORCE, AND HELD 9 MONTHLY TOPIC CALLS ON IDENTIFIED ISSUES OF IMPORTANCE TO BETTER SUPPORT ADULTS LIVING WITH TSC. THE ADULT REGIONAL COORDINATOR PROGRAM WAS DEVELOPED WITH 10 ADULT VOLUNTEERS NOW SUPPORTING ADULTS 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 OVER 1,500 MEMBERS FROM 69 COUNTRIES AS OF DECEMBER 31, 2012. 335697 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 2012, THE TS ALLIANCE PRODUCED THREE ISSUES OF ITS NATIONAL MAGAZINE, PERSPECTIVE, WHICH IS MAILED TO MORE THAN 13,000 CONSTITUENTS AS WELL AS POSTED ON THE WEBSITE. THE TS ALLIANCE'S WEBSITE INCREASES AWARENESS AND PROVIDES EXTENSIVE EDUCATION WITH 799,000 TO 1.2 MILLION HITS MONTHLY FROM AN AVERAGE OF MORE THAN 9,250 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 5,000 MEMBERS, WHILE ITS TWITTER ACCOUNT HAS 600-PLUS FOLLOWERS. THE TS ALLIANCE ALSO PROVIDES PUBLIC EDUCATION THROUGH A SERIES OF REGIONAL TSC CONFERENCES; FOUR WERE HELD IN 2012 INCLUDING WASHINGTON, DC; HOUSTON, TX; LOS ANGELES, CA; AND BOSTON, MA. TO INCREASE PUBLIC AWARENESS, THE TS ALLIANCE HEAVILY PROMOTED MAY AS NATIONAL TSC AWARENESS MONTH VIA ITS VARIOUS SOCIAL MEDIA AND WEB PROPERTIES, AND IT TOOK THE LEAD IN PROMOTING THE VERY FIRST TSC GLOBAL AWARENESS DAY ON MAY 15. THIS INCLUDED A RADIO MEDIA TOUR AND AUDIO RELEASE ON TSC GLOBAL AWARENESS DAY WITH TOTAL OUTREACH TO 8,065,000 LISTENERS ON 2,007 NETWORKS AND 2,015 AIRINGS AND A WINDOW DISPLAY IN ROCKEFELLER CENTER, NEW YORK CITY THROUGHOUT MAY. WITH THE FDA-APPROVAL OF THE SECOND TSC INDICATION, THE TS ALLIANCE BROADENED PUBLIC AWARENESS THROUGH OUTREACH TO PRESS AND PARTICIPATION IN A SECOND RADIO MEDIA TOUR REACHING A TOTAL LISTENERSHIP OF 3,913,000 WITH PLACEMENT ON 19 NETWORKS. IN 2012, THE TS ALLIANCE CO-SPONSORED A REPORT ON EPILEPSY BY THE INSTITUTE OF MEDICINE THROUGH OUR PARTNERSHIP WITH VISION 2020, A COALITION THAT FOCUSES ON EPILEPSY RESEARCH, CARE, SERVICES, EDUCATION, AND ADVOCACY EFFORTS. THIS LANDMARK STUDY PROVIDES THE BLUEPRINT FOR IMPROVING THE OUTCOMES FOR THOSE LIVING WITH EPILEPSY. A FULL REPORT AND RECOMMENDATIONS CAN BE FOUND AT: HTTP://WWW.IOM.EDU/REPORTS/2012/EPILEPSY-ACROSS-THE-SPECTRUM.ASPX. 725124 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 SEVERAL PROFESSIONAL MEETINGS INCLUDING: LAM FOUNDATION CONFERENCE; 4TH INTERNATIONAL BIRT-HOGG-DUBE SYMPOSIUM; WORLD ORPHAN DRUG CONGRESS; ASSOCIATION OF CLINICAL RESEARCH PROFESSIONALS CONFERENCE; NINDS AUTISM AND EPILEPSY WORKSHOP; INTERAGENCY COLLABORATIVE TO ADVANCE RESEARCH IN EPILEPSY (ICARE); PARTNERING TO ADVANCE THERAPEUTICS FOR NEUROLOGICAL DISORDERS: THE NINDS NONPROFIT FORUM; NORD/DIA ANNUAL CONFERENCE ON RARE DISEASES AND ORPHAN PRODUCTS; CHILD NEUROLOGY SOCIETY ANNUAL MEETING; AND THE INTERNATIONAL TSC RESEARCH CONFERENCE IN ITALY. 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 THE TSC SPECIAL INTEREST GROUP SCIENTIFIC SESSION. 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. GOVERNMENT RELATIONS FOCUSES ON EDUCATING MEMBERS OF CONGRESS ABOUT TSC TO FURTHER TSC RESEARCH, AWARENESS AND CLINICAL CARE. IN 2012, THE TS ALLIANCE GRASSROOTS VOLUNTEERS CONDUCTED A MARCH ON CAPITOL HILL RESULTING IN 66 MEMBERS OF THE HOUSE OF REPRESENTATIVES SIGNING A LETTER OF SUPPORT CIRCULATED BY REPRESENTATIVE LORETTA SANCHEZ (D-CA) AND 13 SENATORS SIGNING A BIPARTISAN LETTER OF SUPPORT CIRCULATED BY SENATOR RON WYDEN (D-OR) FOR FY13 APPROPRIATIONS. THE US CONGRESS APPROPRIATED $6 MILLION FOR FY13 TO TSC RESEARCH THROUGH THE DEPARTMENT OF DEFENSE'S 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. THROUGH 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 AND A THROUGH TSCRP FUNDED RESEARCH ON THE DEVELOPMENT OF ANIMAL MODELS OF TSC THAT HAVE SEIZURES AND A BETTER UNDERSTAND THE ETIOLOGY OF TSC, A CLINICAL TRIAL IS PLANNED 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 THE INAUGURAL TSC GLOBAL AWARENESS DAY ON MAY 15, 2012. THIS EVENT WAS ATTENDED BY CONGRESSIONAL STAFF AND KEY MEMBERS OF THE TSC RESEARCH AND GRASSROOTS COMMUNITY. 725124 2601218 1 1 0 1 0 0 0 0 0 1 1 0 0 1 1 1 0 1 0 0 1 1 0 1 1 0 0 1 0 1 0 0 0 0 0 0 1 0 1 0 0 0 0 1 0 0 0 1 23 0 1 16 1 0 0 0 0 0 1 1 1 1 0 X 26 25 0 0 1 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 X THE ORGANIZATION 3015629890 801 ROEDER ROAD NO 750 SILVER SPRING MD 20910 HENRY SHAPIRO 5.00 X X 0 0 0 MATT BOLGER 5.00 X X 0 0 0 DAVID PARKES 5.00 X X 0 0 0 CELIA MASTBAUM 5.00 X X 0 0 0 KEITH HALL 5.00 X X 0 0 0 JULIE BLUM 3.00 X 0 0 0 MARK CARROLL 2.00 X 0 0 0 RITA DIDOMENICO 2.00 X 0 0 0 PETER CRINO MD PHD 2.00 X 0 0 0 REIKO DONATO 4.00 X 0 0 0 WILLIAM FORD 2.00 X 0 0 0 JENNIFER GLASSMAN 2.00 X 0 0 0 STEVEN GOLDSTEIN 2.00 X 0 0 0 ROB MOSS 2.00 X 0 0 0 RON HEFFRON 2.00 X 0 0 0 ELIZABETH HENSKE MD 2.00 X 0 0 0 LINDA JACKSON 2.00 X 0 0 0 DEBORA MORITZ 4.00 X 0 0 0 THEODORE MASTROIANNI 2.00 X 0 0 0 ALAN MARSHALL 2.00 X 0 0 0 DAVID MICHAELS 2.00 X 0 0 0 COURTNEY O'MALLEY 2.00 X 0 0 0 JOHN NICHOLSON 2.00 X 0 0 0 REBECCA ANHANG PRICE 2.00 X 0 0 0 JUDITH SHOULAK 2.00 X 0 0 0 ELIZABETH THIELE MD PHD 2.00 X 0 0 0 KARI L ROSBECK 50.00 5.00 X 138889 13889 34200 MARY JANE PERRAUT 45.00 5.00 X 95260 11907 11322 STEVEN L ROBERDS 45.00 X 158107 0 27901 392256 25796 73423 3 0 1 0 0 82623 1610679 202000 1304341 28975 3199643 RESEARCH PROGRAM REVEN 900099 116786 116786 NOVARTIS CONTRACT 900099 86000 86000 202786 9794 9794 125 -125 -125 -125 19470 1610679 109818 -90348 -90348 OTHER 900099 22550 22550 22550 3344300 202786 0 -58129 762957 762957 77000 77000 491475 289424 79422 122629 595250 350687 96291 148272 16717 9820 2686 4211 65473 38462 10519 16492 84156 49438 13520 21198 30133 14246 12232 3655 29788 16775 5563 7450 98880 98880 16500 16500 59342 24319 3202 31821 245670 105992 64256 75422 62333 15600 46310 423 144950 144950 205354 177292 1690 26372 88911 76693 12113 105 47306 44840 2466 8249 8249 NATURAL HISTORY DATABAS 179725 179725 CLINICAL RESEARCH NETWO 112501 112501 BANK AND CREDIT CARD FE 39446 39446 EQUIPMENT & MAINTENANCE 14391 1498 10757 2136 12197 155069 -209736 66864 3488704 2601218 343936 543550 X 87606 43803 0 43803 2222455 2334967 864087 492140 379000 336000 319 86517 8002 4395 138019 155998 377609 277197 141717 100412 4221079 4452762 7974678 7963191 143549 32281 1628 1628 77136 85127 222313 119036 X 4804940 5255154 2067981 1709557 879444 879444 7752365 7844155 7974678 7963191 X -144404 -19 236215 X X 0 1 X 1 0 X 3324865 3221297 1449542 3812563 3199643 15007910 3324865 3221297 1449542 3812563 3199643 15007910 252551 14755359 35978 4704 7821 9722 9794 68019 13767 3967 5728 13037 23048 59547 15135476 2228284 0.97490 0.93450 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 16179 125231 141410 3330791 3472201 323610 80903 0 0 326843 226416 334138 323610 1211007 1816511 152958 74182 163120 141410 531670 81711 56604 83535 80903 302753 454130 34107 7007 7688 16179 64981 4221150 43996 420983 202000 26764 4457365 4443045 29825 -47583 175000 29137 4221150 3866081 13835 584775 21646 4443045 3750509 13523 312223 210174 3866081 4856856 6722 -832060 281009 3750509 0.78840 0.19730 0.01430 0 1 1 27000 27000 0 21819 13930 7889 328790 236267 92523 100412 INTEREST IN NET ASSETS OF AFFILIATE 4457365 DUE FROM AFFILIATE -4603 4452762 ACCRUED COMPENSATION 85127 85127 X 3679620 -19 99124 236215 335320 3344300 0 3344300 3587830 99124 99124 3488706 0 3488706 DESCRIPTION OF INTENDED USE OF ENDOWMENT FUNDS: 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. DESCRIPTION OF UNCERTAIN TAX POSITIONS UNDER FIN 48: PART X, LINE 2: THE ALLIANCE BELIEVES THAT IT HAS APPROPRIATE SUPPORT FOR ANY INCOME TAX POSITIONS TAKEN. THEREFORE, MANAGEMENT HAS NOT IDENTIFIED ANY UNCERTAIN INCOME TAX POSITIONS. AT A MINIMUM, THE JUNE 30, 2009 THROUGH DECEMBER 31, 2012 TAX PERIODS ARE OPEN FOR EXAMINATION BY TAXING AUTHORITIES. PART XI, LINE 2D - OTHER ADJUSTMENTS: CHANGE IN INTEREST IN ENDOWMENT FUND 236,215. 0 EUROPE 0 0 GRANTS TO RECIPIENTS RESEARCH AWARDS 77000 0 0 0 0 0 0 77000 0 77000 EUROPE RESEARCH GRANT 77000 CHECK CASH 0 0 0 0 0 0 PROCEDURE FOR MONITORING GRANTS OUTSIDE THE U.S.: SCHEDULE F, 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. METHOD USED TO ACCCOUNT FOR EXPENDITURES: SCHEDULE F, PART I, LINE 3: CASH X 0 BLUE ROOM EVENTS INC 5777 WEST CENTURY BLVD STE 880 LOS ANGELES CA 90045 COMEDY FOR A CURE EVENT 0 182521 16500 182521 182521 16500 182521 WALKS 1212247 1212247 51638 LA COMEDY FOR CURE 198021 183451 14570 31850 0 219881 214981 4900 26330 1630149 1610679 19470 109818 109818 -90348 1 BRIGHAM & WOMEN'S HOSPITAL 75 FRANCIS STREET BOSTON MA 02115 042312909 501(C)(3) 103102 CLINCAL TRIALS AND RESEARCH GRANTS VANDERBILT UNIVERSITY MEDICAL CENTER DEPT OF FINANCE DEPT AT 40303 ATLANTA GA 31192 620476822 501(C)(3) 141000 RESEARCH GRANT UNIVERSITY OF TEXAS PO BOX 4786-750 HOUSTON TX 77210 746000949 501(C)(3) 12066 RESEARCH GRANT CHILDREN'S HOSPITAL PO BOX 414413 BOSTON MA 02241 042774441 501(C)(3) 271865 RESEARCH GRANT SEIZURE TRACKER 4008 RONSON DRIVE ALEXANDRIA VA 22310 262311059 6000 RESEARCH GRANT NEW YORK UNIVERSITY MEDICAL CENTER 550 1ST AVE NEW YORK NY 10016 135562308 501(C)(3) 11499 RESEARCH GRANT MASSACHUSETTS GENERAL HOSPITAL PO BOX 414876 BOSTON MA 02241 042697983 501(C)(3) 76835 RESEARCH GRANT CINCINNATI CHILDREN'S HOSPITAL 3333 BURNET AVE ML 7030 CINCINNATI OH 452293039 310833936 501(C)(3) 180960 RESEARCH GRANT UNIVERSITY OF TEXAS MD ANDERSON CANCER CENTER PO BOX 4786-750 HOUSTON TX 77210 746000949 501(C)(3) -40370 RESEARCH GRANT 8 7 PROCEDURE FOR MONITORING GRANTS IN THE U.S.: PART I, LINE 2: SCHEDULE I, PART I, LINE 2: THE TS ALLIANCE HAS FUNDED MORE THAN $16.5 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 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 138889 13889 0 0 0 0 4167 417 26924 2692 169980 16998 0 0 STEVEN L ROBERDS 158107 0 0 0 0 0 4743 0 23158 0 186008 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. SUPPLEMENTAL INFORMATION PART III 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. LISA MOSS SPOUSE-BOARD MEMBER 50200 SEE BELOW 0 LISA MOSS IS MARRIED TO BOARD MEMBER ROBERT MOSS. MS MOSS WORKED FOR A PORTION OF THE YEAR AS A PART-TIME, INDEPENDENT CONSULTANT ON TWO EVENTS, ART FOR A CURE AND THE NATIONAL WALK ON THE MALL. HER CONSULTING AGREEMENT ENDED IN JUNE 16, 2012. MS. MOSS THEN SUBMITTED AN APPLICATION FOR EMPLOYMENT FOR THE DIRECTOR OF DONOR RELATION POSITION, COMPETING AGAINST OTHER QUALIFIED CANDIDATES. SHE WAS RIGOROUSLY INTERVIEWED BY A SEARCH COMMITTEE, BY THE CEO AND BY A STAFF TEAM. SHE BEGAN FULL-TIME EMPLOYMENT JULY 30, 2012. ROBERT MOSS RESIGNED FROM THE BOARD IN NOVEMBER 2012. X SPECIAL EVENT 28975 FMV 0 0 0 FORM 990, PART VI, SECTION A, LINE 4 THE TS ALLIANCE MADE SEVERAL REVISIONS TO ITS ORGANIZATIONAL BYLAWS TO REFLECT MINOR CHANGES IN OPERATIONAL PROCEDURES. THE BYLAWS WERE APPROVED BY THE BOARD OF DIRECTORS ON JUNE 13, 2012. 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 2012: THE FOLLOWING CONFLICTS OF INTEREST WERE DISCLOSED: BOARD MEMBER ROBERT MOSS'S COMPANY SEIZURE TRACKER WAS PAID $6,000 FOR SOFTWARE TO TRACK SEIZURE ACTIVITY. BOARD MEMBER ELIZABETH THIELE, MD, PHD IS EMPLOYED AT MASSACHUSETTS GENERAL HOSPITAL WHICH RECEIVED A $20,000 GRANT FOR THE TSC NATURAL HISTORY DATABASE. BOARD MEMBER ELIZABETH HENSKE, MD IS EMPLOYED AT BRIGHAM AND WOMEN'S HOSPITAL WHICH RECEIVED A RESEARCH GRANT OF $53,602 FOR THE TARGETING AUTOPHAGY & CELLULAR METABOLISM FOR TREATMENT OF TSC PROJECT. 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. CHANGES IN NET ASSETS OR FUND BALANCES: FORM 990, PART XI, LINE 9: CHANGE IN INTEREST IN AFFILIATE AND UNREALIZED LOSS 236,215. 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 202000 CASH