2015-03-24T08:24:54-05:00 2014-12-31 521855942 TATE & TRYON 2021 L STREET NW WASHINGTON DC 20036 990 2014-01-01 953018799 NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC NATI 3015629890 801 ROEDER ROAD NO 750 SILVER SPRING MD 20910 KARI L ROSBECK PRESIDENT AND CEO 3015629890 2015-03-24 1 ELIZABETH HELLER P00397829 2022932200 2014 2016-03-07 17:11:31Z TUBEROUS SCLEROSIS ALLIANCE KARI L ROSBECK 801 ROEDER ROAD NO 750 SILVER SPRING MD 20910 4632117 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. 24 24 20 2000 0 0 3239048 3124386 983127 1237559 13800 10654 -84729 6348 4151246 4378947 903892 457520 0 0 1438637 1529944 16500 16500 669490 1726952 2267797 4085981 4271761 65265 107186 9171713 8933439 724870 312893 8446843 8620546 X THE TS ALLIANCE IS DEDICATED TO FINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THE AFFECTED. 0 0 1508138 433720 550887 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 $18 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, AND ROTHBERG COURAGE AWARDS. 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 COMMITTEES RECOMMENDATIONS AND THE RELEVANCE OF THE APPLICATIONS TO THE TS ALLIANCES 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 PERSONS HEALTH OVER THEIR LIFETIME. AS OF DECEMBER 2014, 1,500 PEOPLE WITH TUBEROUS SCLEROSIS COMPLEX WERE ENROLLED IN THE PROJECT FROM AMONG 17 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 2014, THE TS ALLIANCE INVESTED $487,708 IN THE TSC DATABASE. THIS SPENDING IS SIMILAR TO 2013 BUT REPRESENTS A CONSIDERABLE INCREASE OVER PRE-2013 YEARS FOR TWO REASONS. FIRST, THE TS ALLIANCE MOVED EXISTING RECORDS TO 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, TWO DATABASE SITES WERE ADDED AND MORE FUNDING WAS PROVIDED TO THE 17 PARTICIPATING SITES TO INCREASE ENROLLMENT AND COMPLETENESS OF RECORDS MOVED TO THE NEW PLATFORM. A CONTRACT WITH NOVARTIS WAS EXECUTED IN NOVEMBER 2012 TO PROVIDE TS ALLIANCE WITH FUNDING TO ENHANCE AND GROW THE TSC DATABASE THROUGH 2015. A TOTAL OF 13 RESEARCH AWARDS AND CLINICAL RESEARCH CONSORTIUM SUPPORT WERE FUNDED DURING 2014 FOR $486,788. THE TS ALLIANCE CONTINUED TO SUPPORT SIX RESEARCH GRANTS AWARDED IN PREVIOUS YEARS. ADDITIONALLY, SEVEN NEW RESEARCH AWARDS WERE FUNDED BEGINNING IN 2014 TO: (1) THE VAN ANDEL RESEARCH INSTITUTE TO INITIATE AND OPERATE A TSC BIOSAMPLE REPOSITORY UNDER THE DIRECTION OF THE TS ALLIANCE, (2) DR. GABRIELLA DARCANGELO (RUTGERS UNIVERSITY) TO DEVELOP HUMAN TSC NEURONS DERIVED FROM INDUCED PLURIPOTENT STEM CELLS, (3) DR. WEI SHI (CHILDRENS HOSPITAL, LOS ANGELES) TO DEVELOP AND TEST A NOVEL MOUSE MODEL OF LAM, (4) DR. GERTA HOXHAJ (HARVARD SCHOOL OF PUBLIC HEALTH) TO STUDY THE ROLE OF THE PROTEIN TBC1D7 IN CELL MIGRATION IN NEURONS AND ANGIOMYOLIPOMAS, (5) DR. MICHAEL HIGLEY (YALE UNIVERSITY) TO LEARN HOW LOSS OF TSC1 DISRUPTS BRAIN SIGNALING CIRCUITS IN MICE, (6) DR. MUSTAFA SAHIN (BOSTON CHILDRENS HOSPITAL) FOR SUPPLEMENTAL SUPPORT OF IMAGING ANALYSIS IN A NEW NIH-FUNDED RARE DISEASES CLINICAL RESEARCH NETWORK (RDCRN), AND (7) BOSTON CHILDRENS HOSPITAL TO ENABLE A FACE-TO-FACE KICK-OFF MEETING FOR THE RDCRN TO FACILITATE A RAPID START TO OPEN COLLABORATION BETWEEN RESEARCHERS WORKING ON THREE RELATED RARE DISORDERS: TSC, PHELAN-MCDERMID SYNDROME, AND PTEN DISORDERS. AMONG THE SIX ONGOING GRANTS, THE TSC DRUG SCREENING PROGRAM CONTINUED SUPPORTING (1) 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, (2) DR. CARMEN PRIOLO (BRIGHAM AND WOMENS HOSPITAL) TO STUDY POTENTIAL BIOMARKERS IN BLOOD TO ASSESS PROGRESSION OF LAM, (3) DR. REBECCA IHRIE (VANDERBILT UNIVERSITY) TO STUDY THE CELLULAR ORIGIN OF SUBEPENDYMAL GIANT CELL ASTROCYTOMAS IN TSC TO DETERMINE NEW APPROACHES TO TREATMENT, (4) DR. DAVID KWIATKOWSKI (BRIGHAM AND WOMENS HOSPITAL) TO COLLECT AND ANALYZE BIOSAMPLES FROM A NEW EUROPEAN CLINICAL TRIAL TO TREAT OR PREVENT INFANTILE SPASMS IN TSC, (5) DR. GINA LEE (CORNELL UNIVERSITY) TO TEST FOR COMPOUNDS THAT AFFECTING CELLULAR METABOLISM THAT COULD BE USED TO BETTER TREAT TUMORS ASSOCIATED WITH TSC, AND (6) DR. SUE POVEY (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. THE TSC BIOSAMPLE REPOSITORY IS A NEW 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. SUCH SAMPLES ARE CURRENTLY UNAVAILABLE, AND THE TS ALLIANCES 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 TS ALLIANCE CONTRACTED WITH THE VAN ANDEL RESEARCH INSTITUTE IN GRAND RAPIDS, MICHIGAN, TO HOST AND DISTRIBUTE BIOSAMPLES. SAMPLES IN THE REPOSITORY WILL BE AVAILABLE TO QUALIFIED RESEARCHERS WORLDWIDE AND WILL BE ASSOCIATED WITH DETAILED CLINICAL DATA, SUCH AS THAT FOUND IN OUR EXISTING TSC NATURAL HISTORY DATABASE. SAMPLE COLLECTION BEGINS IN EARLY 2015.THE TSC CLINICAL RESEARCH CONSORTIUM CONTINUED TO BE A KEY PART OF THE RESEARCH STRATEGY, ALTHOUGH ONLY A SMALL AMOUNT OF TS ALLIANCE FINANCIAL SUPPORT WAS REQUIRED BECAUSE OF THE CONSORTIUMS SUCCESS IN OBTAINING NIH FUNDING. THE FIVE CLINICS COMPRISING THIS CONSORTIUM RECEIVED NIH GRANTS TO CONDUCT TWO CLINICAL STUDIES INITIATED IN 2013. 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 HAS DEVELOPED INFRASTRUCTURE AND PROCESSES TO FORM THE BASIS OF AN ONGOING AND GROWING TSC CLINICAL RESEARCH NETWORK. THE CONSORTIUM RECEIVED A NEW FIVE-YEAR, MULTI-MILLION DOLLAR AWARD FROM NIH TO BE PART OF THE RDCRN DESCRIBED IN THE PRECEDING PARAGRAPH. THE CONSORTIUM SUBMITTED TWO ADDITIONAL NIH GRANT APPLICATIONS THAT, IF FUNDED, WILL ADD TWO ADDITIONAL CLINICAL SITES AND ONE ADDITIONAL PRECLINICAL SITE. THE CONSORTIUM IS ALSO RUNNING A SUB-STUDY OF A LARGER INDUSTRY-SPONSORED PHASE 3 TRIAL. 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 ALLIANCES CHIEF SCIENTIFIC OFFICER IS ON THE LEADERSHIP TEAM OF THE CONSORTIUM. 1281024 23800 686672 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 2,519 INDIVIDUALS AND FAMILIES DEALING WITH TSC. THE VICE PRESIDENT OF OUTREACH ATTENDED 34 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 2014 THERE WERE THERE ARE 24 EDUCATIONAL LIAISON VOLUNTEERS, WORKING IN 24 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 1,766 FREE PARENT TRAININGS AND WEBINARS ON EDUCATIONAL ADVOCACY OFFERED TO FAMILIES DEALING WITH EDUCATIONAL ISSUES FOR THEIR CHILDREN. THERE WERE FOUR NEW PUBLICATIONS DEVELOPED FOR THE YOUNG ADULT WEBPAGE: "CHOOSING HEALTH INSURANCE FOR YOUNG ADULTS WITH TSC,"" HEALTH EATING TIPS," AND "HEALTH GROCERY SHOPPING FOR YOUNG ADULTS WITH TSC, AND "FINANCE FOR YOUNG ADULTS WITH TSC WANTING TO LIVE INDEPENDENTLY. THERE WERE 9 ADULT TOPIC CALLS HELD ON TOPICS SPECIFIC TO INDEPENDENT AND SEMI-INDEPENDENT ADULTS WITH TSC. A PILOT DEPENDENT ADULT TRANSITION RESOURCE COORDINATOR PROGRAM WAS DEVELOPED FOR LA. THIS PROGRAM WAS DEVELOPED TO SUPPORT CAREGIVERS OF DEPENDENT ADULTS. THERE WERE 3 DEPENDENT ADULT TOPIC CALLS HELD THIS YEAR TO SUPPORT CAREGIVERS OF DEPENDENT ADULTS. THE ADULT REGIONAL COORDINATOR PROGRAM DEVELOPED TO SUPPORT ADULTS ONE ON ONE SUPPORTED 1,508 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 OTHERS EXPERIENCE. PRESENTLY THE TSC POPULATION THROUGH INSPIRE INCLUDES ALMOST 3,000 MEMBERS FROM 87 COUNTRIES AS OF DECEMBER 31, 2014. IN ADDITION, THE TSC CLINIC AMBASSADORS PROGRAM SUPPORTED 503 INDIVIDUALS AND FAMILIES ONE ON ONE IN TEN TSC CLINICS LOCATED IN MIAMI, FL; CINCINNATI, OH; COLUMBUS, OH; ATLANTA, GA; NASHVILLE, TN; BIRMINGHAM, AL; DENVER, CO, AND DALLAS, TX, AUSTIN TX, AND SALT LAKE CITY UT. THROUGH THE NETWORK OF 34 VOLUNTEER BRANCHES OF THE ORGANIZATION, CALLED COMMUNITY ALLIANCES, LOCAL EDUCATION AND SUPPORT GROUP MEETINGS ARE HELD THROUGHOUT THE COUNTRY. THE TS ALLIANCE HOSTED 16 EDUCATIONAL MEETINGS AND 40 GATHERINGS HELD AT COMMUNITY ALLIANCE LOCATIONS DURING THE FISCAL YEAR 2014. 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. 284172 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 2014, THE TS ALLIANCE PRODUCED THREE ISSUES OF ITS NATIONAL MAGAZINE, PERSPECTIVE, WHICH IS MAILED TO ALMOST 15,000 CONSTITUENTS AS WELL AS POSTED ON THE WEBSITE. THE TS ALLIANCES WEBSITE INCREASES AWARENESS AND PROVIDES EXTENSIVE EDUCATION VIA 1 MILLION-PLUS HITS MONTHLY FROM AN AVERAGE OF MORE THAN 37,500 UNIQUE VISITORS. THE TS ALLIANCE ALSO RELIES HEAVILY ON SOCIAL MEDIA TO EDUCATE CONSTITUENTS AND PROMOTE NEW RESOURCES AND EVENTS. ITS FACEBOOK GROUP BOASTS MORE THAN 6,398 MEMBERS, WHILE ITS TWITTER ACCOUNT HAS 1,100-PLUS FOLLOWERS. THE TS ALLIANCE ALSO PROVIDED PUBLIC EDUCATION THROUGH THE 2014 WORLD TSC CONFERENCE, WHICH ATTRACTED 690 PARTICIPANTS, FROM 44 STATES AND 20 COUNTRIES, DURING THE THREE-DAY EVENT. THIRTY-FOUR OF THE FORTY-EIGHT EDUCATIONAL SESSIONS WERE VIDEOTAPED AND UPLOADED TO THE TS ALLIANCE YOUTUBE CHANNEL FOR ANYONE TO VIEW AFTER THE CONFERENCE; THESE RECORDINGS HAVE GARNERED 3,035 VIEWS.TO INCREASE PUBLIC AWARENESS, THE TS ALLIANCE HEAVILY PROMOTED TSC GLOBAL AWARENESS DAY ON MAY 15. THIS YEARS EVENT INCLUDED A DEDICATED WEBSITE, TSCGLOBALDAY.ORG, TO HOUSE A "WORLD OF THANKS" SOCIAL MEDIA/PHOTO CAMPAIGN WHICH GARNERED 160 PICTURES FROM 24 COUNTRIES AS WELL AS A HUGE FACEBOOK/TWITTER PUSH. IN ADDITION, THE TS ALLIANCE PRESIDENT & CEO, ITS CHIEF SCIENTIFIC OFFICER AND DR. KEVIN ESS PARTICIPATED IN 9 RADIO INTERVIEWS, WHICH ULTIMATELY AIRED ON 1,764 TIMES REACHING MORE THAN 10.4 MILLION LISTENERS. TO HELP EDUCATE PHYSICIANS, THE TS ALLIANCE UPDATED ITS "DIAGNOSIS, SURVEILLANCE AND MANAGEMENT OF INDIVIDUALS WITH TSC" PUBLICATION TO REFLECT CURRENT STANDARDS. THE ORGANIZATION ALSO PRODUCED AN EDUCATIONAL VIDEO FOCUSED ON GOVERNMENT ADVOCACY. 178975 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 DEFENSES (DOD) CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM (CDMRP) TOOK PLACE IN EARLY MARCH 2014. MORE THAN 80 MEMBERS OF THE TSC COMMUNITY PARTICIPATED, ASKING THEIR SENATORS AND REPRESENTATIVES TO SIGN ONTO DEAR COLLEAGUE LETTERS IN SUPPORT OF TSC RESEARCH. IN THE HOUSE, 25% OR 110 DEMOCRATIC AND REPUBLICAN REPRESENTATIVES SIGNED ONTO A BIPARTISAN DEAR COLLEAGUE LETTER OF SUPPORT FROM REPRESENTATIVES LORETTA SANCHEZ (D-CA) AND MIKE FITZPATRICK (R-PA). THE NUMBER OF SIGNATURES SECURED FOR THE SANCHEZ-FITZPATRICK LETTER GREATLY EXCEEDS THE NUMBERS SET IN PREVIOUS YEARS. THE SENATE LETTER WAS SPONSORED BY SENATORS CHRIS MURPHY (D-CT) AND JOHNNY ISAKSON (R-GA) AND INCLUDED 17 SIGNATURES. IN FY2015, THE TSC RESEARCH PROGRAM AT THE CDMRP RECEIVED A $6 MILLION APPROPRIATION, BRINGING THE CUMULATIVE FUNDING TO $59 MILLION SINCE 2002 AS A RESULT OF OUR SUCCESSFUL GRASSROOTS EFFORTS. RESEARCH DONE 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 (THE MOST RECENT YEAR FOR WHICH AWARDS HAVE BEEN ANNOUNCED); 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, 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 AN INDUSTRY-SPONSORED 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, 2014. CONGRESSIONAL STAFF AND KEY MEMBERS OF THE TSC RESEARCH AND GRASSROOTS COMMUNITIES ATTENDED THE EVENT. 38343 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 ADDITIONAL PEER-REVIEWED ARTICLES TO MAKE AVAILABLE TO HEALTHCARE PROVIDERS WORLDWIDE THE LATEST RECOMMENDATIONS ON THE SURVEILLANCE AND MANAGEMENT OF CARDIAC AND NEUROPSYCHIATRIC ASPECTS OF TSC ARISING 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 REACHED 3,084 HEALTHCARE PROVIDERS TO EDUCATE THEM ON THE PUBLISHED CONSENSUS RECOMMENDATIONS. ADDITIONALLY, THE TS ALLIANCE WORKED WITH OTHER ADVOCACY GROUPS REPRESENTING RARE EPILEPSY SYNDROMES TO FURTHER IMPLEMENT RECOMMENDATIONS FROM AN INSTITUTE OF MEDICINE (IOM) REPORT ON THE EPILEPSIES, INCLUDING HELPING BUILD AN ONLINE PORTAL WHERE EPILEPSY RESEARCHERS CAN IN REAL-TIME SEARCH FOR FUNDING OPPORTUNITIES AVAILABLE FROM NON-PROFIT ORGANIZATIONS. THE TS ALLIANCE ALSO JOINED FORCES WITH OTHER NON-PROFIT ORGANIZATIONS COMMITTED TO EPILEPSY RESEARCH TO CREATE THE EPILEPSY LEADERSHIP COUNCIL, AN ALLIANCE THAT WILL CONTINUE TO KEEP THE FOCUS ON PATIENT-CENTERED RESEARCH AND EDUCATIONAL INITIATIVES RECOMMENDED BY THE IOM REPORT.THE TS ALLIANCE PARTICIPATED IN AND PRESENTED AT SEVERAL PROFESSIONAL MEETINGS INCLUDING: LAM FOUNDATION CONFERENCE; A LAM BIOMARKER SUMMIT; THE INTERNATIONAL RESEARCH CONFERENCE ON TSC AND LAM IN BEIJING, CHINA; CONGRESSIONAL SHOWCASE WITH THE COALITION FOR IMAGING AND BIOENGINNERING RESEARCH (CIBR); IPHARMA CONFERENCE; ASSOCIATION OF CLINICAL RESEARCH PROFESSIONALS CONFERENCE; INTERAGENCY COLLABORATIVE TO ADVANCE RESEARCH IN EPILEPSY (ICARE); RARE DISEASE DAY AT NIH; THE NINDS NONPROFIT FORUM; NORD/DIA ANNUAL CONFERENCE ON RARE DISEASES AND ORPHAN PRODUCTS; PARTNERS AGAINST MORTALITY IN EPILEPSY (PAME) CONFERENCE; AND PARTNERING FOR CURES. 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 VICE PRESIDENT OF OUTREACH 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 ONE KEY TO INDIVIDUALS HAVING A GOOD QUALITY OF LIFE. 217318 3290652 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 0 0 0 0 0 1 0 0 0 1 36 0 1 20 1 0 0 0 0 0 1 1 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 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 KEITH HALL CHAIR 5.00 X X 0 0 0 LAURA LUBBERS VICE CHAIR 5.00 X X 0 0 0 MATT BOLGER IMMEDIATE PAST CHAIR 5.00 X X 0 0 0 DAVID MICHAELS TREASURER 5.00 1.00 X X 0 0 0 DAVID FITZMAURICE SECRETARY 5.00 X X 0 0 0 HENRY SHAPIRO BOARD MEMBER 2.00 X 0 0 0 REIKO DONATO BOARD MEMBER 2.00 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 RITA DIDOMENICO BOARD MEMBER 2.00 2.00 X 0 0 0 JOHN BISSLER MD BOARD MEMBER 2.00 X 0 0 0 STEVEN GOLDSTEIN BOARD MEMBER 2.00 1.00 X 0 0 0 LINDA JACKSON BOARD MEMBER 2.00 X 0 0 0 DARREN MILES BOARD MEMBER 2.00 X 0 0 0 BRENDAN MANNING PHD 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 COURTNEY O'MALLEY BOARD MEMBER 2.00 X 0 0 0 JOHN NICHOLSON JR MD 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 149894 14989 37209 MARY JANE PERRAUT CHIEF FINANCIAL OFFICER 40.00 5.00 X 114746 14343 29989 STEVEN L ROBERDS CHIEF SCIENTIFIC OFFICER 45.00 X 177610 0 30064 442250 29332 97262 3 0 1 0 0 76776 1441630 97500 1508480 4826 3124386 CONFERENCE REVENUE 900099 686672 686672 CONTRACT REVENUE 900099 550887 550887 1237559 13455 13455 49148 51949 -2801 -2801 -2801 198218 1441630 201221 -3003 -3003 OTHER 900099 9351 9351 9351 4378947 1237559 0 17002 426520 426520 31000 31000 583030 364214 70187 148629 749407 469154 90140 190113 21386 13238 2584 5564 86986 53845 10509 22632 89135 55175 10769 23191 21528 10400 11128 29740 20979 4289 4472 103319 103319 16500 16500 122117 85165 25278 11674 259887 111177 61617 87093 104823 14771 89952 100 81561 239 81082 240 172228 115598 10116 46514 77720 45269 28319 4132 47368 3213 44155 7852 7852 WORLD CONFERENCE 610103 609504 599 NATURAL HISTORY DATABAS 487708 487708 BANK AND CREDIT CARD FE 57445 290 36503 20652 CLINICAL RESEARCH NETWO 53068 53068 31330 216806 -272861 87385 4271761 3290652 311619 669490 X 106582 53291 0 53291 3054646 2333085 248045 590177 162675 417226 326326 274463 181502 75260 279219 93332 203501 185887 4995018 5057341 9171713 8933439 230387 299920 494483 12973 724870 312893 X 5953119 6117155 1614280 1623947 879444 879444 8446843 8620546 9171713 8933439 X 107186 -16 66533 X X 0 1 X 1 0 X 1449542 3812563 3199643 3239048 3124386 14825182 1449542 3812563 3199643 3239048 3124386 14825182 1755592 13069590 7821 9722 9794 13335 13455 54127 5728 13037 23048 5984 9351 57148 14936457 2698294 0.87500 0.89620 X SCHEDULE A, PART II, LINE 10, EXPLANATION OF OTHER INCOME: INCOME FROM OTHER PROGRAM RELATED ACTIVITIES - 2010 AMOUNT: $ 5,728. 2011 AMOUNT: $ 13,037. 2012 AMOUNT: $ 23,048. 2013 AMOUNT: $ 5,984. 2014 AMOUNT: $ 9,351. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 905 178070 178975 4076955 4255930 362797 90699 0 0 334138 323610 354161 362797 1374706 2062059 163120 141410 142520 178975 626025 83535 80903 88540 90699 343677 515516 7688 16179 919 905 25691 4994766 47153 179553 97500 62673 5061299 4457365 42690 718381 197200 26470 4994766 4221150 43996 420983 202000 26764 4457365 4443045 29825 -47583 175000 29137 4221150 3866081 13835 584775 21646 4443045 0.81970 0.17380 0.00650 0 1 1 156545 39666 116879 14829 10812 4017 107845 42854 64991 185887 INTEREST IN NET ASSETS OF AFFILIATE 5061299 DUE FROM AFFILIATE -3958 5057341 X 4472650 -16 27186 66533 93703 4378947 0 4378947 4298947 27186 27186 4271761 0 4271761 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. PART XI, LINE 2D - OTHER ADJUSTMENTS: CHANGE IN INTEREST IN AFFILIATE 66,533. 1 EUROPE 0 0 GRANTS TO RECIPIENTS RESEARCH AWARDS 31000 0 0 0 0 0 0 31000 0 31000 EUROPE RESEARCH GRANT 31000 CHECK CASH 0 1 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 206410 16500 189910 206410 16500 189910 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 1046964 1046964 48946 NY 40TH CELEBRATION 267673 143687 123986 90630 2 325211 250979 74232 61645 1639848 1441630 198218 201221 201221 -3003 1 BRIGHAM & WOMEN'S HOSPITAL 75 FRANCIS STREET BOSTON MA 02115 042312909 501(C)(3) 72484 RESEARCH GRANT VANDERBILT UNIVERSITY MEDICAL CENTER DEPT OF FINANCE DEPT AT 40303 ATLANTA GA 31192 620476822 501(C)(3) 65755 RESEARCH GRANT CHILDREN'S HOSPITAL LOS ANGELES 4650 SUNSET BLVD MAIL STOP 97 LOS ANGELES CA 900276062 956121916 501(C)(3) 18750 RESEARCH GRANT CORNELL UNIVERSITY 575 LEXINGTON AVE 9TH FL NEW YORK NY 10022 131623978 501(C)(3) 8016 POSTDOCTORAL FELLOWSHIP AWARD RUTGERS UNIVERSITY 3 RUTGERS PLAZA NEW BRUNSWICK NJ 08901 226001086 501(C)(3) 75000 RESEARCH GRANT HARVARD UNIVERSITY PO BOX 415649 BOSTON MA 022415649 042103580 501(C)(3) 109734 POSTDOCTORAL FELLOWSHIP AWARD YALE UNIVERSITY PO BOX 1873 NEW HAVEN CT 065081873 060646973 501(C)(3) 18750 RESEARCH GRANT 7 0 PART I, LINE 2: THE TS ALLIANCE HAS FUNDED MORE THAN $18 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 & CLINICAL FELLOWSHIPS - 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 1 0 0 0 KARI L ROSBECK PRESIDENT & CEO 137954 13497 11940 1492 0 0 4700 470 31351 3135 185945 18594 0 0 MARY JANE PERRAUT CHIEF FINANCIAL OFFICER 104824 13103 9922 1240 0 0 3525 441 20281 2535 138552 17319 0 0 STEVEN L ROBERDS CHIEF SCIENTIFIC OFFICER 163249 0 14361 0 0 0 5343 0 39668 0 222621 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. PART I, LINE 6 KARI LUTHER ROSBECK, PRESIDENT AND CEO, MARY JANE PERRAUT, CFO, AND STEVE ROBERDS, CSO, ALL HAVE INCENTIVE COMPENSATION EQUAL TO A PERCENTAGE OF THEIR SALARIES 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. 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 2014: THE FOLLOWING CONFLICTS OF INTEREST WERE DISCLOSED: BOARD MEMBER ELIZABETH THIELE, MD, PHD, IS EMPLOYED AT MASSACHUSETTS GENERAL HOSPITAL, WHICH RECEIVED A $31,500 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 66,533. 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 INCOME FOR TSA MD 501(C)(3) LINE 11B, II 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 97500 CASH