2012-04-13T16:58:41-05:00 2011-12-31 521855942 TATE & TRYON 2021 L STREET NW WASHINGTON DC 20036 990 2011-01-01 953018799 NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC NATI 3015629890 801 ROEDER ROAD NO 750 SILVER SPRING MD 20910 KARI L ROSBECK 3015629890 2012-04-13 1 SUBRINA L WOOD P00365899 2022932200 2011 2016-02-24 21:20:13Z TUBEROUS SCLEROSIS ALLIANCE KARI L ROSBECK 801 ROEDER ROAD NO 750 SILVER SPRING MD 20910 4162007 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. 27 27 13 2000 0 0 1449542 3875096 4250 212084 7821 9439 -19424 -131202 1442189 3965417 663012 1174276 0 0 562165 1122866 0 16500 542944 531212 1320882 1756389 3634524 -314200 330893 7808197 7974678 145908 222313 7662289 7752365 X THE TS ALLIANCE IS DEDICATED TO FINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THE AFFECTED. 0 0 1970929 1174276 212084 RESEARCH PROGRAM: THE TS ALLIANCE HAS FUNDED MORE THAN $15.3 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 THE 2011 INTERNATIONAL TSC RESEARCH CONFERENCE. 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, (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.THE 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. 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 2011 MORE THAN 1,120 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. THE TS ALLIANCE RECEIVED A TWO-YEAR $200,000 GRANT AWARD FROM THE PEDIATRIC EPILEPSY RESEARCH FOUNDATION, WHICH WILL HELP UNDERWRITE ABOUT HALF THE CONTINUED OPERATION OF THE TSC DATABASE THROUGH 2013.THE TS ALLIANCE HOSTED THE 2011 INTERNATIONAL TSC RESEARCH CONFERENCE, "SUMMIT ON DRUG DISCOVERY IN TSC AND RELATED DISORDERS", WHICH PROVIDED THE OPPORTUNITY FOR RESEARCH AND HEALTHCARE COMMUNITIES TO COME TOGETHER TO DISCUSS THE LATEST PROGRESS IN CLINICAL, TRANSLATIONAL, AND BASIC RESEARCH. EXCITING NEW CLINICAL DATA PRESENTATIONS DESCRIBED THE EFFICACY OF EVEROLIMUS AND SIROLIMUS AT REDUCING GROWTH OF TUMORS IN THE BRAIN AND KIDNEY, RESPECTIVELY. ADDITIONALLY, A SMALL CLINICAL STUDY DEMONSTRATED ENCOURAGING EFFECTS OF SIROLIMUS ON REDUCING THE SEVERITY OF FACIAL ANGIOFIBROMAS. SCIENTISTS ALSO DESCRIBED IMPORTANT PROGRESS ON PRE-CLINICAL STUDIES EVALUATING THE EFFECT OF DRUGS THAT AFFECT OTHER PARTS OF THE MTOR PATHWAY OR OTHER CELLULAR MECHANISMS THAT IMPACT CELL GROWTH. FROM BASIC RESEARCH WE ARE LEARNING NEW BIOLOGICAL ACTIVITIES - SUCH AS NEURON GROWTH, PROTEIN DEGRADATION IN THE CELL, AND EFFECTS OF GLIAL CELLS ON NEURONAL EXCITABILITY - THAT COULD BE IMPORTANT TARGETS FOR NEW THERAPEUTIC APPROACHES. A TOTAL OF 24 RESEARCH AWARDS WERE FUNDED IN 2011 FOR $1,174,277. THE TS ALLIANCE ROTHBERG COURAGE AWARD FOR RESEARCH CONTINUED SUPPORTING TWO ONGOING PROJECTS, THE DEVELOPMENT OF SEIZURE TRACKER AS AN EPILEPSY CLINICAL TRIAL TOOL AND THE TSC NEUROCOGNITIVE TRIAL, A CLINICAL STUDY OF EVEROLIMUS EFFECTS ON NEUROCOGNITION INITIATED THIS YEAR AT CHILDREN'S HOSPITAL BOSTON AND CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER. THREE NEW COURAGE AWARDS WERE GRANTED IN 2011 FROM NET ASSETS:TO DR. HOPE NORTHRUP(UNIVERSITY OF TEXAS AT HOUSTON) TO SUPPORT THE IDENTIFICATION OF ADDITIONAL TSC GENES, TO DR. JOHN BISSLER (CINCINNATI CHILDRENS HOSPITAL AND MEDICAL CENTER) FOR THE DEVELOPMENT OF MRI-GUIDED HIGH-INTENSITY FOCUSED ULTRASOUND TO TREAT KIDNEY OR LUNG LESIONS, AND TO DR. ELIZABETH HENSKE(BRIGHAM & WOMENS HOSPITAL) TO SUPPORT A STUDY TO DETERMINE WHETHER INHIBITION OF AUTOPHAGY MIGHT KILL ABNORMALLY GROWING CELLS IN TSC.THE TS ALLIANCE CONTINUED TO SUPPORT 13 RESEARCH GRANTS AWARDED IN PREVIOUS YEARS. ADDITIONALLY, TWO NEW POSTDOCTORAL RESEARCH GRANTS WERE INITIATED THIS YEAR TO SUPPORT YOUNG SCIENTISTS WORKING ON TSC RESEARCH. DR. MAGDALENA TYBURCZY (BRIGHAM & WOMEN'S HOSPITAL) WAS AWARDED A GRANT FOR DETERMINING THE MOLECULAR PATHOGENESIS OF TSC IN INDIVIDUALS IN WHOM NO TSC1 OR TSC2 MUTATION HAS BEEN IDENTIFIED, AND DR. BRIAN SIROKY (CINCINNATI CHILDREN'S HOSPITAL AND MEDICAL CENTER) WAS FUNDED TO STUDY THE ROLE OF ENDOPLASMIC RETICULUM STRESS IN THE PATHOGENESIS AND TREATMENT OF TSC RENAL CELL CYSTIC DISEASE. 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. THIS YEAR THE TS ALLIANCE AWARDED DRUG SCREENING PROGRAM GRANTS TO SUPPORT PROJECTS THAT WILL TEST DRUGS FOR THEIR POTENTIAL TO INFLUENCE NEUROLOGIC MANIFESTATIONS OF TSC. AN AWARD TO DR. MUSTAFA SAHIN (CHILDREN'S HOSPITAL BOSTON) WAS GRANTED 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. A GRANT TO DR. SEOK-HYUNG KIM (VANDERBILT UNIVERSITY) WAS AWARDED TO SUPPORT THE SCREENING OF COMPOUNDS TO REVERSE ABNORMAL NEURONAL PHENOTYPES IN TSC2 MUTANT ZEBRAFISH. BOTH DRS. SAHIN AND KIM WILL TEST A FEW THOUSAND DRUGS, INCLUDING HUNDREDS OF DRUGS APPROVED BY THE FDA FOR OTHER INDICATIONS, IN AN EFFORT TO IDENTIFY DRUGS THAT IMPROVE NEURONAL FUNCTION AND COULD BE MOVED RELATIVELY RAPIDLY INTO CLINICAL TESTING.AS TRANSLATIONAL RESEARCH IN TSC PRODUCES ADDITIONAL IDEAS FOR CLINICAL STUDIES, THE EFFICIENT INITIATION AND CONDUCT OF FUTURE CLINICAL TRIALS WILL REQUIRE INFRASTRUCTURE IN PLACE TO ENABLE INVESTIGATORS TO QUICKLY AND AFFORDABLY EXECUTE STUDIES. TO BEGIN BUILDING SUCH AN INFRASTRUCTURE, CLINICIANS FROM FIVE TSC CLINICS CAME TOGETHER TO ESTABLISH A TSC CLINICAL RESEARCH CONSORTIUM THAT CAN EXPAND AS NEEDED TO ACCOMMODATE FUTURE CLINICAL STUDIES. THE TS ALLIANCE CHIEF SCIENTIFIC OFFICER IS ON THE LEADERSHIP TEAM OF THE CONSORTIUM. 380633 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 3 TOWN HALL MEETINGS HELD AT COMMUNITY ALLIANCE LOCATIONS DURING THE FISCAL YEAR 2011 AS WELL AS 22 OTHER EDUCATIONAL MEETINGS AND SUPPORT MEETINGS. THESE MEETINGS FACILITATED STRONGER CONNECTIONS WITH PEERS, RESEARCHERS, AND CLINICIANS IN THE COMMUNITY AND EDUCATED THE TSC COMMUNITY ABOUT CLINICAL TRIALS. THE TS ALLIANCE ALSO CONTINUED ITS SERIES OF FREE EDUCATIONAL TELECONFERENCES AIMED AT REACHING CONSTITUENTS ACROSS THE COUNTRY WITH CLINICAL CARE SPECIALISTS AND SCIENTISTS FROM THE CONVENIENCE OF THEIR HOMES. IN ADDITION, THE DEPARTMENT OF ADVOCACY AND EDUCATION SUPPORTS FAMILIES AND INDIVIDUALS FROM ALL OVER THE UNITED STATES BY PROVIDING SUPPORT AND INFORMATION INCLUDING DIRECT SUPPORT TWO DAYS PER MONTH AT TSC CLINICS IN MIAMI, CINCINNATI, COLUMBUS OR ATLANTA DURING ONE-ON-ONE MEETINGS. IN ADDITION, VOLUNTEER CLINIC AMBASSADORS SUPPORTED INDIVIDUALS IN COLUMBUS, CINCINNATI, ATLANTA, MIAMI AND BIRMINGHAM.THE DIRECTOR OF ADVOCACY AND EDUCATION ATTENDS INDIVIDUAL EDUCATION PROGRAM (IEP) MEETINGS IN PERSON, THROUGH SKYPE, AND CONFERENCE CALLS AND ALSO MAINTAINS AN ONGOING BLOG TO ENCOURAGE FREQUENT AND INTERACTIVE CONVERSATION WITH CONSTITUENTS AS THEY ENCOUNTER CHALLENGES ON A DAILY BASIS. THERE ARE 10 ADVOCATE LIAISON VOLUNTEERS, WORKING IN 10 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 309 FREE PARENT TRAININGS AND WEBINARS ON EDUCATIONAL ADVOCACY OFFERED TO FAMILIES DEALING WITH EDUCATIONAL ISSUES FOR THEIR CHILDREN. THERE WERE 33 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. THE DIRECTOR OF EDUCATION AND ADVOCACY ALSO FACILITATES THE ADULT TASK FORCE, WHICH HOLDS MONTHLY TOPIC CALLS IN IDENTIFIED ISSUES OF IMPORTANCE TO BETTER SUPPORT ADULTS LIVING WITH TSC. FINALLY, THE TS ALLIANCE CREATED A NEW ONLINE SOCIAL NETWORK THROUGH "INSPIRE". THIS SOCIAL NETWORK WAS DEVELOPED TO BETTER FIT THE NEEDS OF OUR TSC POPULATION AND INCLUDED 1,012 MEMBERS FROM 53 COUNTRIES AS OF DECEMBER 31, 2011. 194475 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 2011, THE TS ALLIANCE PRODUCED THREE ISSUES OF ITS NATIONAL MAGAZINE, PERSPECTIVE, WHICH IS MAILED TO MORE THAN 12,000 CONSTITUENTS AS WELL AS POSTED ON THE WEBSITE. THE TS ALLIANCE'S WEBSITE INCREASES AWARENESS AND PROVIDES EXTENSIVE EDUCATION THOUGH ITS WEBSITE VIA 850,000 TO 1 MILLION HITS MONTHLY FROM AN AVERAGE OF MORE THAN 18,750 UNIQUE VISITORS. THE SITE'S ONLINE MAIL LIST FORM CONTINUES TO CAPTURE 50 OR MORE NEW CONSTITUENTS EVERY MONTH. THE TS ALLIANCE WEBSITE WAS REDESIGNED IN SUMMER 2011 TO REFLECT SIMPLER NAVIGATION, INCORPORATE MORE VIDEO AND ALLOW FOR INSTANT ACCESS TO A WEALTH OF INFORMATION. THE TS ALLIANCE RELIES HEAVILY ON SOCIAL MEDIA TO EDUCATE CONSTITUENTS AND PROMOTE NEW RESOURCES AND EVENTS. ITS FACEBOOK GROUP BOASTS MORE THAN 4,700 MEMBERS, WHILE ITS TWITTER ACCOUNT HAS ALMOST 400 FOLLOWERS. THE TS ALLIANCE ALSO PROVIDES PUBLIC EDUCATION THROUGH A SERIES OF FREE RESEARCH TELECONFERENCES, FEATURING PRESENTATIONS FROM THE NATION'S TOP RESEARCHERS, CLINICIANS AND OTHER HEALTHCARE PROVIDERS, WHICH ARE ALSO RECORDED AND MADE AVAILABLE ON THE WEBSITE FOR ALL CONSTITUENTS. 26188 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: THE 2011 BIO INTERNATIONAL CONVENTION; CHILD NEUROLOGY FOUNDATION'S ADVISORY BOARD MEETING; COALITION FOR IMAGING AND BIOENGINEERING RESEARCH (CIBR); INSTITUTE OF MEDICINE COMMITTEE MEETINGS ON THE PUBLIC HEALTH DIMENSIONS OF THE EPILEPSIES; LAM FOUNDATION CONFERENCE; RESEARCH AMERICA'S NATIONAL HEALTH RESEARCH FORUM; NATIONAL INSTITUTES OF HEALTH OFFICE OF RARE DISEASES CONFERENCE; NIAMS COALITION 2011 OUTREACH & EDUCATION MEETING; PARTNERING TO ADVANCE THERAPEUTICS FOR NEUROLOGICAL DISORDERS: THE NINDS NONPROFIT FORUM; NORD/DIA ANNUAL CONFERENCE ON RARE DISEASES AND ORPHAN PRODUCTS; SOCIETY FOR NEUROSCIENCE ANNUAL MEETING AND NIH-SPONSORED EPILEPSY SOCIAL; AND TUBEROUS SCLEROSIS ASSOCIATION INTERNATIONAL TSC RESEARCH CONFERENCE IN IRELAND. IN ADDITION, THE TS ALLIANCE ATTENDED THE AMERICAN EPILEPSY SOCIETY (AES) MEETING IN BALTIMORE, INCLUDING A TSC RECEPTION FOR MORE THAN 50 RESEARCHERS, A MEET-THE-EXPERT PANEL WITH 10 TSC FAMILIES AND 9 TSC CLINICIAN EXPERTS, AND THE TSC SPECIAL INTEREST GROUP SCIENTIFIC SESSION. FINALLY, THE TS ALLIANCE CO-SPONSORED WITH THE CENTER FOR BIOMEDICAL CONTINUING EDUCATION, A CME SPEAKER PROGRAM SERIES: EMERGING THERAPEUTIC OPTIONS FOR TUBEROUS SCLEROSIS COMPLEX. FOURTEEN TSC CLINIC DIRECTORS SERVED AS FACULTY. THIS PROGRAM PRESENTED 3 GRAND ROUNDS AND 5 DINNER SESSIONS IN DALLAS, NEW YORK, LOS ANGELES, ATLANTA AND ST. PAUL. 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. THROUGH THIS COLLABORATION THE TS ALLIANCE HAS PROVIDED INFORMATION ON MORE THAN 300 FREE TRAINING ON EDUCATIONAL ADVOCACY FOR FAMILIES DEALING WITH EDUCATIONAL ISSUES FOR THEIR CHILDREN THROUGHOUT THE COUNTRY. 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. PROVIDING CHILDREN WITH APPROPRIATE EDUCATION IS THE KEY TO INDIVIDUALS HAVING A GOOD QUALITY OF LIFE. 163120 GOVERNMENT RELATIONS FOCUSES ON EDUCATING MEMBERS OF CONGRESS ABOUT TSC TO FURTHER TSC RESEARCH, AWARENESS AND CLINICAL CARE. IN 2011, THE TS ALLIANCE GRASSROOTS VOLUNTEERS CONDUCTED A MARCH ON CAPITOL HILL RESULTING IN 40 MEMBERS OF THE HOUSE OF REPRESENTATIVES SIGNING A LETTER OF SUPPORT CIRCULATED BY REPRESENTATIVE LORETTA SANCHEZ (D-CA) AND 9 SENATORS SIGNING A BIPARTISAN LETTER OF SUPPORT CIRCULATED BY SENATOR SHERROD BROWN (D-OH) FOR FY12 APPROPRIATIONS. THE US CONGRESS APPROPRIATED $6.4 MILLION FOR FY11 IN APRIL 2011 AND $5.1 MILLION FOR FY12 IN DECEMBER 2011 TO TSC RESEARCH THROUGH THE DEPARTMENT OF DEFENSE CONGRESSIONALLY DIRECTED MEDICAL RESEARCH PROGRAM IN 2011. 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 THE RESEARCH SUPPORTED BY THE TSCRP 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, WHICH IS IMPORTANT IN NORMAL CELL GROWTH AND HAS BEEN SHOWN TO BE DISRUPTED IN MANY TYPES OF CANCER. THIS RESEARCH HAS RAPIDLY LED TO THE DEVELOPMENT OF ANIMAL MODELS OF TSC AND CLINICAL TRIALS, RESULTING IN THE FIRST DRUG SPECIFICALLY TO TREAT TSC BEING APPROVED BY THE FDA IN OCTOBER 2010. NONE OF THIS PROGRESS WOULD HAVE BEEN POSSIBLE WITHOUT THE CRITICAL SUPPORT PROVIDED THROUGH THE TSCRP. 189308 2735345 1 1 0 1 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 0 0 1 0 0 0 0 1 0 0 0 0 1 24 0 1 13 1 0 0 0 0 0 1 1 1 6 0 X 27 27 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 X THE ORGANIZATION 3015629890 801 ROEDER ROAD NO 750 SILVER SPRING MD 20910 CELIA MASTBAUM 5.00 X X 0 0 0 DAVID PARKES 5.00 X X 0 0 0 HENRY SHAPIRO 5.00 X X 0 0 0 MATT BOLGER 5.00 X X 0 0 0 RITA DIDOMENICO 5.00 X X 0 0 0 JULIE BLUM 3.00 X 0 0 0 MARK CARROLL 2.00 X 0 0 0 WILL COOPER SR 4.00 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 JANIE FROST RN 2.00 X 0 0 0 JENNIFER GLASSMAN 2.00 X 0 0 0 STEVEN GOLDSTEIN 2.00 X 0 0 0 KEITH HALL 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 CATHY KRINSKY 2.00 X 0 0 0 THEODORE MASTROIANNI 2.00 X 0 0 0 ALAN MARSHALL 2.00 X 0 0 0 KATHY MAYRSOHN 2.00 X 0 0 0 JOHN NICHOLSON MD MBA 2.00 X 0 0 0 COURTNEY O'MALLEY 2.00 X 0 0 0 DAVID SCHENKEIN MD 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 X 141328 2884 30797 141328 2884 30797 1 0 1 0 0 76544 1720223 175000 16000 1887329 60533 3875096 RESEARCH PROGRAM REVEN 900099 212084 212084 212084 9722 9722 283 -283 -283 -283 52068 1720223 196307 -144239 -144239 OTHER 900099 13037 13037 13037 3965417 212084 0 -121763 1141026 1141026 33250 33250 175009 97448 25463 52098 768460 428840 110396 229224 21778 12000 3356 6422 78872 43461 12154 23257 78747 43392 12135 23220 23962 14581 9381 29967 29967 98880 98880 16500 16500 119658 93029 5669 20960 222476 114387 43801 64288 67756 16325 51261 170 147924 148 147454 322 151852 125893 3474 22485 159976 147414 12562 36133 32370 3763 8428 8428 NATURAL HISTORY DATABAS 112768 112768 BANK AND CREDIT CARD FE 56902 148 56682 72 MISCELLANEOUS EXPENSES 55714 8771 40112 6831 CLINIC EXPENSE 28486 28486 142728 -219823 77095 3634524 2735345 356235 542944 X 87842 43921 0 43921 290797 2222455 2430404 864087 375150 379000 5378 319 15410 8002 105444 138019 399132 257415 145096 141717 4440518 4221079 7808197 7974678 78297 143549 11171 1628 56440 77136 145908 222313 X 5037196 4804940 1745649 2067981 879444 879444 7662289 7752365 7808197 7974678 X 330893 -240817 X X 0 1 1 X 0 X 3524716 3324865 3221297 1449542 3812563 15332983 3524716 3324865 3221297 1449542 3812563 15332983 793585 14539398 128476 35978 4704 7821 9722 186701 2467 13767 3967 5728 13037 38966 15558650 4133242 0.93450 0.95560 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 7688 155432 163120 3519642 3682762 334138 83535 0 0 296364 326843 226416 334138 1183761 1775642 142286 152958 74182 163120 532546 74091 81711 56604 83535 295941 443912 16771 34107 7007 7688 65573 4443045 29825 -47583 175000 29137 4221150 3866081 13835 584775 21646 4443045 3750509 13523 312223 210174 3866081 4856856 6722 -832060 281009 3750509 0.20830 0.79170 0 1 1 27000 27000 0 336611 199524 137087 35521 30891 4630 141717 INTEREST IN NET ASSETS OF AFFILIATE 4221150 DUE FROM AFFILIATE -71 4221079 ACCRUED COMPENSATION 77136 77136 3965417 3634524 330893 78 -240895 -240817 90076 3740848 78 16248 -240895 -224569 3965417 0 3965417 3650772 16248 16248 3634524 0 3634524 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: 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, 2008 THROUGH DECEMBER 31, 2011 TAX PERIODS ARE OPEN FOR EXAMINATION BY TAXING AUTHORITIES. PART XI, LINE 8 - OTHER ADJUSTMENTS: CHANGE IN INTEREST IN AFFILIATE AND UNREALIZED LOSS -221,895. LOSS ON SUBLEASE -19,000. TOTAL TO SCHEDULE D, PART XI, LINE 8: -240,895. PART XII, LINE 2D - OTHER ADJUSTMENTS: CHANGE IN INTEREST IN ENDOWMENT FUND -221,895. LOSS ON SUBLEASE -19,000. 0 EUROPE 0 0 GRANTS TO RECIPIENTS RESEARCH AWARDS 33250 0 0 0 0 0 0 33250 0 33250 X EUROPE RESEARCH GRANT 33250 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 212675 16500 212675 212675 16500 212675 WALKS 1234855 1225105 9750 53500 LA COMEDY FOR CURE 212675 191921 20754 29728 9 324761 303197 21564 113079 1772291 1720223 52068 196307 196307 -144239 1 BRIGHAM & WOMEN'S HOSPITAL 75 FRANCIS STREET BOSTON MA 02115 042312909 501(C)(3) 136000 CLINCAL TRIALS AND RESEARCH GRANTS BETH ISRAEL DEACONESS MEDICAL CENTER 330 BROOKLINE AVENUE E/BR 264 BOSTON MA 022155491 042103881 501(C)(3) 50000 RESEARCH GRANT DREXEL UNIVERSITY SCHOOL OF MEDICINE 3201 ARCH STREET SUITE 100 PHILADELPHIA PA 19104 231352630 501(C)(3) 12500 RESEARCH GRANT VANDERBILT UNIVERSITY MEDICAL CENTER DEPT OF FINANCE DEPT AT 40303 ATLANTA GA 31192 620476822 501(C)(3) 103500 RESEARCH GRANT UNIVERSITY OF TEXAS PO BOX 4786-750 HOUSTON TX 77210 746000949 501(C)(3) 50000 RESEARCH GRANT UNIVERSITY OF WASHINGTON 4326 UNIVERSITY WAY NE SEATTLE WA 98105 916001537 501(C)(3) 40698 RESEARCH GRANT CHILDREN'S HOSPITAL PO BOX 414413 BOSTON MA 02241 042774441 501(C)(3) 188064 RESEARCH GRANT SEIZURE TRACKER 4008 RONSON DRIVE ALEXANDRIA VA 22310 262311059 6000 RESEARCH GRANT HARVARD MEDICAL SCHOOL 25 SHATTUCK ST SUITE 509 BOSTON MA 02115 042103580 501(C)(3) 49500 RESEARCH GRANT COLUMBIA UNIVERSITY MEDICAL CENTER PO BOX 29789 NEW YORK NY 10087 135598093 501(C)(3) 66000 RESEARCH GRANT NEW YORK UNIVERSITY MEDICAL CENTER 550 1ST AVE NEW YORK NY 10016 135562308 501(C)(3) 45959 RESEARCH GRANT MASSACHUSETTS GENERAL HOSPITAL PO BOX 414876 BOSTON MA 02241 042697983 501(C)(3) 97430 RESEARCH GRANT CINCINNATI CHILDREN'S HOSPITAL 3333 BURNET AVE ML 7030 CINCINNATI OH 452293039 310833936 501(C)(3) 152260 RESEARCH GRANT UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER PO BOX 203382 HOUSTON TX 772163382 741761309 501(C)(3) 143115 RESEARCH GRANT 13 14 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 $15.3 MILLION IN RESEARCH ON TSC SINCE 1984. DIRECTED BY STEVEN L. ROBERDS, PH.D, VICE PRESIDENT AND 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 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 136526 2786 4802 98 0 0 4427 90 25754 526 171509 3500 0 0 PART I, LINE 5 KARI LUTHER ROSBECK, PRESIDENT AND CEO, HAS INCENTIVE COMPENSATION EQUAL TO A PERCENTAGE OF HER SALARY BASED ON KEY PERFORMANCE OBJECTIVES AS ESTABLISHED BY THE COMPENSATION COMMITTEE. PART I, LINE 6 KARI LUTHER ROSBECK, PRESIDENT AND CEO, HAS INCENTIVE COMPENSATION EQUAL TO A PERCENTAGE OF HER SALARY BASED ON KEY PERFORMANCE OBJECTIVES AS ESTABLISHED BY THE COMPENSATION COMMITT SUPPLEMENTAL INFORMATION PART III KARI LUTHER ROSBECK IS THE CEO OF TUBEROUS SCLEROSIS ALLIANCE AND IS COMPENSATED THROUGH TS ALLIANCE. MS ROSBECK SERVES THE ENDOWMENT WITHOUT COMPENSATION. X VARIOUS 98 60533 FMV SPECIAL EVENT GIFTS & ITEMS 0 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 2011: THE FOLLOWING CONFLICTS OF INTEREST WERE DISCLOSED: BOARD MEMBER JANIE FROST'S HUSBAND IS A PARTNER IN THE MINNESOTA EPILEPSY GROUP, WHICH RECEIVED $6,768 FOR DATABASE PAYMENTS FROM TS ALLIANCE. BOARD MEMBER ELIZABETH THIELE, MD, PHD IS EMPLOYED AT MASSACHUSETTS GENERAL HOSPITAL WHICH RECEIVED AN $11,500 GRANT FOR HER WORK ON GLUCOSE RESTRICTION ON TSC AND RECEIVED $15,000 FOR DATABASE PAYMENTS. BOARD MEMBER PETER CRINO, MD, PHD IS EMPLOYED AT UNIVERSITY OF PENNSYLVANIA SCHOOL OF MEDICINE WHICH RECEIVED $14,040 FOR DATABASE PAYMENTS. FORM 990, PART VI, SECTION B, LINE 15 THE COMPENSATION COMMITTEE REVIEWS AND APPROVES THE SALARIES OF THE PRESIDENT/CEO, CHIEF STAFF EXECUTIVE OFFICER AND THE CHIEF FINANCIAL OFFICER, 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 5: NET UNREALIZED GAINS ON INVESTMENTS: 78. CHANGE IN INTEREST IN AFFILIATE AND UNREALIZED LOSS -221,895. LOSS ON SUBLEASE -19,000. TOTAL TO FORM 990, PART XI, LINE 5: -240,817. 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 1 1 0 0 0 0 TUBEROUS SCLEROSIS ALLIANCE ENDOWMENT FUND C 175000 CASH