2016-04-04T15:55:00-05:00 2015-12-31 521855942 TATE & TRYON 2021 L STREET NW WASHINGTON DC 20036 990 2015-01-01 953018799 NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC NATI 3015629890 801 Roeder Road No 750 silver spring MD 20910 KARI L ROSBECK President and CEO 3015629890 2016-04-04 1 Elizabeth Heller P00397829 2022932200 2015 2016-09-27 15:27:22Z TUBEROUS SCLEROSIS ALLIANCE KARI L ROSBECK 801 Roeder Road No 750 silver spring MD 20910 4204121 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 COMPLEX WHILE IMPROVING THE LIVES OF THOSE AFFECTED. 20 20 21 1638 0 0 3124386 3514873 1237559 478813 10654 13679 6348 1071 4378947 4008436 457520 488698 0 0 1529944 1544461 16500 0 587943 2267797 1877431 4271761 3910590 107186 97846 8933439 8707847 312893 287236 8620546 8420611 X THE TS ALLIANCE IS DEDICATED TO FINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THOSE AFFECTED. 1 0 1706806 486198 477197 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 $18.8 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 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 committee's recommendations and the relevance of the applications to the TS Alliance's funding priorities, and (3) the Board of Directors then reviews the recommendations of the Science and Medical Committee and makes final approval for funding.A total of 11 research awards were funded during 2015 for $486,198. The TS Alliance continued to support eight research grants awarded in previous years. Additionally, three new research awards were funded beginning in 2015 to: (1) Dr. Brendan Manning (Harvard School of Public Health) to study the repurposing of inhibitors of purine synthesis for TSC treatment, (2) Dr. Polina Kosillo (University of California, Berkeley) for a postdoctoral fellowship to study the impact of TSC1 gene deletion on dopamine neurons, and (3) Dr. Mustafa Sahin (Boston Children's Hospital) to study the "hedgehog" gene and ciliary signaling in TSC. Implemented in 2006, the TSC Natural History Database captures clinical data to document the impact of the disease on a person's health over his or her lifetime. As of December 2015, 1,849 people with tuberous sclerosis complex were enrolled in the project from among 18 U.S.-based sites. The TS Alliance provides funding to participating clinics to perform data entry, monitors the integrity of the database, and makes data available to investigators to answer specific research questions and identify potential participants for clinical trials and studies. In 2015, the TS Alliance invested $467,608 in the TSC Database and designed a sub-project on epilepsy to address detailed questions about epilepsy in TSC. A contract with Novartis executed in November 2012 continued to provide TS Alliance with funding to enhance and grow the TSC Database through 2015. The TSC Biosample Repository is a TS Alliance-directed project initiated in 2014 that will impact research over the next ten years or more. High-quality biosamples such as blood, DNA, and tissues linked to detailed clinical data are required for researchers to understand why TSC is so different from person to person. Such samples are currently unavailable, and the TS Alliance's Science and Medical Committee identified this as a gap that can only be filled effectively with leadership of the TS Alliance, guided by a steering committee of clinicians and researchers. The 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. The Biosample Repository also houses samples collected as part of the TSC Clinical Research Consortium's Rare Disease Clinical Research Network project that launched in 2015. The TS Alliance launched a new TSC Preclinical Consortium in 2015, which will enable prioritization of candidate drugs or compounds based on comparing head-to-head data using consistent animal models and rigorous testing procedures. The TS Alliance is ideally positioned to drive this collaboration-with input from academic, regulatory, and industry stakeholders-by maintaining constant focus on the needs of people with TSC. To drive this project, the TS Alliance contracted with Dr. Daniela Brunner, who has more than 20 years of experience validating in vivo experimental protocols and testing drugs in many animal models of developmental, psychiatric, and neurodegenerative diseases. The TS Alliance has negotiated a license with Brigham and Women's Hospital to use specific mice developed at that institution for experiments done by the TSC Preclinical Consortium. The TS Alliance is also finalizing agreements for use of other TSC mouse models from other institutions and has solicited proposals for breeding of mice and performing epilepsy-related experiments. These proposals will be reviewed to select laboratories best suited for conducting breeding and experiments. Several small and large pharmaceutical companies have expressed interest in the consortium, and all mouse license agreements include the rights for the TS Alliance to perform experiments under contract for commercial entities.The TS Alliance continued to be a key part of the TSC Clinical Research Consortium although only a small amount of TS Alliance financial support was required because of the consortium's success in obtaining NIH funding. 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. An interim analysis of the EEG study demonstrated that, indeed, specific abnormal EEG findings can predict that an infant will progress to develop clinical seizures. 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 TS Alliance continued supporting Dr. Mustafa Sahin (Boston Children's Hospital) and his research of imaging analysis in the rare diseases clinical research network. The consortium submitted an additional NIH grant application that, if funded, will add two additional clinical sites and enable the first clinical trial to prevent the development of epilepsy in infants diagnosed with TSC. As the TSC Preclinical Consortium and 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. The TS Alliance co-sponsored with the Tuberous Sclerosis Association in the UK the 2015 International TSC Research Conference: From Treatment to Prevention, held in Windsor, UK. Approximately 260 attendees from 30 countries participated in the conference featuring oral presentations, a poster session, and ancillary meetings including TSC International and TSCure, a working group of clinical researchers tackling issues necessary to plan clinical trials of very early treatments to prevent manifestations of TSC and LAM. This conference was supported by a grant from Novartis, while The Rothberg Institute for Childhood Diseases was a presenting sponsor. Support was also provided by the Brian O'Brien Family, GW Pharmaceuticals, Bcureful, the Castle Hotel Windsor, the National Institutes of Health, the National Institute of Neurological Disorders and Stroke, and the Nation Center for Advancing Translational Sciences. 608533 2500 1616 Family Services develops programs and services that provide individuals with TSC direct access to information, resources, and specialists experienced in the diagnosis, treatment and management of TSC. The Family Services Department provided support and resources to 2,905 individuals and families dealing with TSC throughout 2015. The Vice President of Outreach attended 39 school meetings (IEPs, Evaluation Team Meetings, 504 Plan Meetings, Resolution Meetings, and Mediations) in person, through SKYPE or Facetime, and via conference calls to support families in attaining educational services for their children throughout the country. In 2015, 24 Educational Liaison volunteers worked in 24 states to connect families to free educational advocacy trainings in collaboration with the states' Parent Training and Information Centers. As a result, more than 1,885 free parent trainings/webinars on educational advocacy were offered to families dealing with educational issues for their children. In addition, the Educator Mentor Program supported 89 school systems in understanding the learning needs of children with TSC. Through a network of 35 volunteer branches of the organization, called Community Alliances, local education and support group meetings were held throughout the country. Through these Community Alliances, the TS Alliance hosted 76 educational meetings and gatherings. Among these 76 meetings was a 13-meeting Town Hall educational series. The series title was New Clinical Research in Epilepsy and Infantile Spasms. These Town Hall meetings were hosted in TSC clinics and other venues across the United States to educate TSC individuals and families about new research in epilepsy and infantile spasms with 160 people attending. One new Community Alliance, the TS Alliance of Kentucky/West Virginia, was added in 2015. The TS Alliance facilitated 7,413 peer-to-peer supports from Adult Regional Coordinators, Clinic Ambassadors, Dependent Adult Transition Resource Coordinators and through Community Alliance meetings.In 2015, the TS Alliance hosted three Regional TSC Conferences held in St. Paul, MN; Stanford, CA; and Winston-Salem, NC with 180 combined attendees. These conferences brought together individuals, parents, caregivers and members of the medical community to provide the most up-to-date information so parents and adults with TSC can make informed decisions when evaluating treatment options. These one-day symposiums offered educational outreach, information on the latest treatments in TSC, research updates, and support options. They featured the region's top experts and provided attendees the opportunity to ask questions in an open panel session with these experts in a nurturing, supportive environment. Regional TSC Conferences provide much-needed forums for the growing number of people facing the daily challenges of TSC. 364102 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 2015, the TS Alliance produced three issues of its national magazine, Perspective, which is mailed to 15,000-plus constituents as well as posted on the website. The TS Alliance's website increases awareness and provides extensive education via 1 million-plus hits monthly from an average of more than 38,000 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 7,000 members, while its Twitter account has 1,400-plus followers. To increase public awareness, the TS Alliance introduced a new public awareness campaign called #IAMTSC. This effort includes a dedicated website at IAMTSC.org, which garnered 21,912 page views from 10,788 unique visitors through December 31. Public service announcements were also filmed and throughout 2015 played 3,807 times on TV stations across the United States, reaching a potential audience of more than 21 million. The TS Alliance once again participated in TSC Global Awareness Day on May 15, where the #IAMTSC theme was leveraged heavily on social media and in a satellite media tour, sponsored by Novartis, featuring the TS Alliance President & CEO and the #IAMTSC campaign's creator-a dad whose daughter has TSC. This media tour reached 4.8 million people. In 2015, the TS Alliance also heavily promoted Infantile Spasms Awareness by producing four new videos for parents whose children with TSC experience these types of seizures; these videos were viewed 1,879 times by December 31. The TS Alliance, in partnership with the Child Neurology Foundation, planned and executed Infantile Spasms Awareness Week, December 1-7. The TS Alliance public awareness campaign included social media, paid advertising to first line physicians and media tour. Facebook advertising to reach misdiagnosed or those seeking a diagnosis reached 31,547 people. Advertising to first line physicians included American College of Emergency Physicians (ACEP) Now Website banner ad with 5,279 impressions, ACEP online newsletter with 21,061 subscribers, and the American Academy of Pediatrics Gateway with 50,000 impressions. The Satellite media tour with 15 aired interviews (3 TV/12 radio) reached a total audience of 2,727,039 (61,023 broadcast; 2,665,966 radio). 126441 Government Relations focuses on educating members of Congress about TSC to further TSC research, awareness and clinical care. The annual TS Alliance March on Capitol Hill to advocate for federal funding for the Tuberous Sclerosis Complex Research Program (TSCRP) at the Department of Defense's (DoD) Congressionally Directed Medical Research Program (CDMRP) took place in early March 2015. 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, 27% or 117 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 22 signatures. In FY2016, the TSC Research Program at the CDMRP received a $6 million appropriation, bringing the cumulative funding to $65 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 at developing drugs to link 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, 2015. Congressional staff and key members of the TSC research and grassroots communities attended the event. 40042 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 also participated in and presented at 32 professional meetings including: The Child Neurology Society Meeting; LAMposium - The LAM Foundation Conference; Congressional Showcase with the Coalition for Imaging and Bioengineering Research (CIBR); Association of Clinical Research Professionals Conference; Interagency Collaborative To Advance Research In Epilepsy (ICARE); Clinical Trials Transformation Initiative; Rare Disease Day at NIH; The NINDS Nonprofit Forum; NORD Annual Conference on Rare Diseases and Orphan Products; DIA Rare Diseases Workshop; ExL's 2nd Rare Disease Collaboration Summit; CBI's Evidence for Value-Based Programs; Society for the Study of Behavioral Phenotypes; 2015 BIO Patient and Health Advocacy Summit; NORD Summit; Translational Neuroscience Symposium; and the American Thoracic Society. In addition, at the American Epilepsy Society (AES) annual meeting, the TS Alliance hosted an Infantile Spasms Awareness Innovation Pavilion exhibit and a TSC reception for more than 100 researchers, clinicians, and community members. The TS Alliance also 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. 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. 166483 2845924 1 1 0 1 0 0 0 0 0 1 1 0 0 1 0 0 0 1 0 0 1 1 0 0 1 0 0 1 0 1 0 0 0 0 0 0 0 0 1 0 0 0 0 1 0 0 0 1 40 0 1 21 1 0 0 0 0 0 1 1 0 0 0 0 X 20 20 0 0 0 0 1 1 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 MD CA AK RI PA MA NH NY NC OR VA CT GA AR HI IL KS KY TN MI NJ NM UT MN WV OK FL AL SC WI MS IN X X X the organization 3015629890 801 Roeder Road No 750 silver spring MD 20910 LAURA LUBBERS CHAIR 5.00 0.00 X X 0 0 0 DAVID FITZMAURICE VICE CHAIR 5.00 0.00 X X 0 0 0 KEITH HALL IMMEDIATE PAST CHAIR 5.00 0.00 X X 0 0 0 REBECCA ANHANG PRICE SECRETARY 5.00 0.00 X X 0 0 0 DARREN MILES TREASURER 5.00 0.00 X X 0 0 0 MARTINA BEBIN BOARD MEMBER 2.00 0.00 X 0 0 0 JOHN BISSLER MD BOARD MEMBER 2.00 0.00 X 0 0 0 Cassandra Carroll bOARD MEMBER 2.00 0.00 X 0 0 0 April Cooper BOARD MEMBER 2.00 0.00 X 0 0 0 Beth Dean BOARD MEMBER 2.00 0.00 X 0 0 0 RITA DIDOMENICO BOARD MEMBER 2.00 2.00 X 0 0 0 STEVEN GOLDSTEIN boARD MEMBER 2.00 1.00 X 0 0 0 Colleen Johns BOARD MEMBER 2.00 0.00 X 0 0 0 BRENDAN MANNING PHD BOARD MEMBER 2.00 0.00 X 0 0 0 THEODORE MASTROIANNI BOARD MEMBER 2.00 0.00 X 0 0 0 DAVID MICHAELS BOARD MEMBER 2.00 1.00 X 0 0 0 DEBORA MORITZ bOARD MEMBER 5.00 0.00 X 0 0 0 COURTNEY O'MALLEY BOARD MEMBER 2.00 0.00 X 0 0 0 DAVID PARKES BOARD MEMBER 2.00 0.00 X 0 0 0 HENRY SHAPIRO BOARD MEMBER 2.00 0.00 X 0 0 0 ELIZABETH THIELE MD PHD BOARD MEMBER 2.00 0.00 X 0 0 0 KARI L ROSBECK PRESIDENT & CEO 54.00 1.00 X 164915 3366 22606 RICHARD A GOLLUB CONTROLLER & CFO (FROM MAR 15) 46.50 3.50 X 89652 6956 16691 MARY JANE PERRAUT CFO (UNTIL APR 15) 49.00 1.00 X 63153 1289 5062 STEVEN L ROBERDS CHIEF SCIENTIFIC OFFICER 45.00 0.00 X 182854 0 25253 500574 11611 69612 2 0 1 0 Cavarocchi Ruscio Dennis Associates 600 Maryland AveSW Ste 835W Washington DC 20024 Government Relations Consulting 101844 1 46963 28136 1435044 202000 1802730 70958 3514873 CONTRACT REVENUE 900099 380405 380405 CONFERENCE REVENUE 900099 98408 98408 478813 16038 16038 62425 64784 -2359 -2359 -2359 130568 1435044 130901 -333 -333 OTHER 900099 1404 1404 1404 4008436 478813 0 14750 X 406419 406419 82279 82279 600211 344247 126537 129427 750769 428883 159634 162252 21280 12488 4262 4530 77483 45470 15521 16492 94718 55584 18973 20161 18992 5864 13128 28862 28862 100571 100571 239238 177886 12421 48931 289138 108490 84983 95665 106681 25757 80624 300 86687 539 85808 340 234542 197818 4222 32502 191443 159308 26972 5163 48890 2777 46113 7175 7175 naTURAL HISTORY DATABAS 467608 467608 CLINICAL RESEARCH NETWO 25568 25568 DUES, FEES & SUBSCRIPTI 24864 1699 21658 1507 OVERHEAD ALLOCATION 0 193757 -262499 68742 7172 2912 2329 1931 3910590 2845924 476723 587943 X 93520 46760 0 46760 2333085 2873836 590177 499163 417226 316197 274463 2450 75260 107800 288659 142222 185887 146437 5057341 4761964 8933439 8707847 299920 270808 12973 16428 312893 287236 X 6117155 5643768 1623947 1897399 879444 879444 8620546 8420611 8933439 8707847 X 97846 -297781 X X 0 1 X 1 0 X 3812563 3199643 3239048 3124386 3514873 16890513 3812563 3199643 3239048 3124386 3514873 16890513 2428340 14462173 9722 9794 13335 13455 16038 62344 13037 23048 5984 9351 1401 52821 17005678 3167937 0.85040 0.87500 X Schedule A, Part II, Line 10, Explanation of Other Income: INCOME FROM OTHER PROGRAM RELATED ACTIVITIES - 2011 Amount: $ 13,037. 2012 Amount: $ 23,048. 2013 Amount: $ 5,984. 2014 Amount: $ 9,351. 2015 Amount: $ 1,401. RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 5047 121394 126441 4167932 4294373 364719 91180 0 0 323610 354161 362797 364719 1405287 2107931 141410 142520 178975 126441 589346 80903 88540 90699 91180 351322 526983 16179 919 905 5047 23050 5061299 29940 -93294 202000 32428 4763517 4994766 47153 179553 97500 62673 5061299 4457365 42690 718381 197200 26470 4994766 4221150 43996 420983 202000 26764 4457365 4443045 29825 -47583 175000 29137 4221150 0.81160 0.18460 0.00380 0 1 1 156545 61945 94600 14829 12429 2400 117285 67848 49437 146437 INTEREST IN NET ASSETS OF AFFILIATE 4763518 DUE FROM AFFILIATE -1554 4761964 3714202 3547 -297781 -294234 4008436 0 4008436 3914137 3547 3547 3910590 0 3910590 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 XI, Line 2d - Other Adjustments: CHANGE IN INTEREST IN AFFILIATE -297,781. 1 Europe 0 0 GRANTS TO RECIPIENTS RESEARCH AWARDS 79779 Australia 0 0 GRANTS TO RECIPIENTS Grant to Tuberous Sclerosis Australia 2500 0 0 0 0 0 0 82279 0 82279 europe research grant 29779 check cash EUrope research grant 50000 CHECk CASH 0 2 0 0 0 0 0 0 Part I, Line 2: Grantee organizations are expected to file annual progress reports to outlined grant goals and milestones. These reports are reviewed by a committee of peers. This committee makes determinations based on quality of work to goals if the grantee organization will continue to receive funding. A final written and financial report is required of all grantees. walks 1095551 993051 102500 57705 COMEDY FOR A CURE 182813 169383 13430 37572 11 287248 272610 14638 35624 1565612 1435044 130568 130901 130901 -333 1 Brigham & Women's Hospital 75 St Francis Street Boston MA 02115 042312909 501 (c )(3) 72484 RESEARCH GRANT Vanderbilt University Financial MgmtDept 1236 PO Box 121236 Dallas TX 753121236 620476822 501 (c )(3) 49317 RESEARCH GRANT Cornell University Weil Medical Col 575 Lexington Ave 9th Fl New York NY 10022 131623978 501 (c )(3) 42000 RESEARCH GRANT Yale University Grant Contract Admin PO Box 1873 New Haven CT 065081873 060646973 501 (c )(3) 75000 RESEARCH GRANT Harvard University School of Public Health Pres Fellows of Harvard Col PO Box 415649 Boston MA 022415649 042103580 501 (c )(3) 75000 RESEARCH GRANT Children's Hospital Los Angeles 4650 Sunset Blvd Mail Stop 97 Los Angeles CA 900275649 956121916 501 (c )(3) 75000 RESEARCH GRANT Harvard T H Chan School of Public Health Pres Fellows of Harvard Col PO Box 415649 Boston MA 022415649 042103580 501 (c )(3) 50000 RESEARCH GRANT Boston Children's Hospital Research Finance PO Box 414413 Boston MA 022414413 042774441 501 (c )(3) 18750 RESEARCH GRANT 8 0 Part I, Line 2: THE TS ALLIANCE HAS FUNDED MORE THAN $18.8 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 REVIEWS 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 153756 3138 11159 228 0 0 5117 104 22464 458 192496 3928 0 0 STEVEN L ROBERDS CHIEF SCIENTIFIC OFFICER 170320 0 12534 0 0 0 5676 0 25114 0 213644 0 0 0 Part I, Line 5 KARI LUTHER ROSBECK, RICHARD GOLLUB, MARY JANE PERRAUT, AND STEVE ROBERDS ALL HAVE INCENTIVE COMPENSATION EQUAL TO A PERCENTAGE OF THEIR SALARIES BASED ON KEY PERFORMANCE OBJECTIVES AS ESTABLISHED BY THE COMPENSATION COMMITTEE. Part I, Line 6 KARI LUTHER ROSBECK, RICHARD GOLLUB, MARY JANE PERRAUT, AND STEVE ROBERDS 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, RICHARD GOLLUB, AND MARY JANE PERRAUT ARE EMPLOYEES OF TUBEROUS SCLEROSIS ALLIANCE AND ARE COMPENSATED THROUGH TS ALLIANCE. THESE INDIVIDUALS SERVE THE ENDOWMENT WITHOUT COMPENSATION. X 10 64784 FMV X FOOD, BEVERAGE, AND OTHER EVENT SUPPLIES 8 6174 FMV 0 0 0 Form 990, Part III, line 2 The TS Alliance launched a new TSC Preclinical Consortium in 2015, which will enable prioritization of candidate treatments based on comparing head-to-head data using consistent animal models and rigorous testing procedures. Form 990, Part VI, Section A, line 6 Membership is available to any person who subscribes to the purposes and objectives of the corporation, without regard to race, religion, gender, sexual orientation, age, color, national origin or mental or physical handicap or disability. There shall be no limit to the number of members in the Corporation. 1) There may be one or more classes of membership as determined by the Board. 2) Membership is not transferable or assignable. Form 990, Part VI, Section A, line 7a The TS Alliance is a membership-based organization, which means members help elect the Board of Directors. The TS Alliance membership program in 2015 was composed of several levels from complimentary basic members to gold level at $1,000. 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 member is recused from discussion on an issue, the minutes of committee meeting and board meeting will duly record such actions. The following potential conflicts of interest were disclosed for 2015: BOARD MEMBER BRENDAN MANNING, PH.D., IS EMPLOYED AT HARVARD COLLEGE, WHICH RECEIVED A $50,000 ROTHBERG COURAGE AWARD GRANT TO STUDY THE REPURPOSING OF CLINICALLY APPROVED IMMUNOSUPPRESSANTS AS A SAFE AND EFFECTIVE TREATMENT FOR TSC. BOARD MEMBER ELIZABETH THIELE, M.D., PH.D., IS EMPLOYED AT MASSACHUSETTS GENERAL HOSPITAL, WHICH RECEIVED $33,700 FOR HER WORK ON THE TSC NATURAL HISTORY DATABASE. Form 990, Part VI, Section B, line 15 The Compensation Committee reviews and approves the salaries of the President/CEO, Chief Scientific Officer, Controller & CFO, and any employee appearing on the Form 990, in accordance with the Tuberous Sclerosis Alliance Bylaws. Such review and approval occurs initially upon hiring, upon annual reviews and whenever modified. The Organization's executive remuneration has been structured to ensure that it: is reasonable; provides a competitive compensation program to retain, attract and reward key employees and achieves clear alignment between total remuneration and delivered business and personal performance over the short and long-terms. The compensation is reviewed by the Compensation Committee to ensure: - Comparability, - Proper review, and - Substantiation in setting the compensation. Form 990, Part VI, Section C, line 19 All governing documents, conflict of interest policy and financial statements are available upon written request. Part IX In 2015, the TS Alliance invested time and funds in the search for a new Controller and CFO. The board felt it was vital to make this investment for the continuity and success of organizational infrastructure. We also experienced the unplanned, sudden death of the Director of Special Events and Corporate Partnerships, leading to a nationwide search for a replacement. Simultaneously, the TS Alliance was building new research tools, the Biosample Repository and the Preclinical Consortium. Although the foundation of a very strong program was built for exponential growth in 2016, the Biosample Repository did not collect samples as quickly as planned and the Preclinical Consortium did not enter the testing phase that was anticipated in 2015. As a result of all of these circumstances, the expense ratios for administration and fundraising are heavier than planned at 27% and program expenses lower than planned at 73%. Form 990, Part XI, line 9: change in interest in affiliate -297,781. FORM 990, PART XII, LINE 2C THE AUDIT REVIEW PROCESS HAS REMAINED 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 202000 cash