2018-04-09T10:27:59-05:00 2017-12-31 WITHUMSMITHBROWNPC 4600 EAST WEST HWY 900 BETHESDA MD 208143423 990 2017-01-01 953018799 NATIONAL TUBEROUS SCLEROSIS ASSOCIATION INC % THE ORGANIZATION NATI 3015629890 801 ROEDER ROAD Suite 750 SILVER SPRING MD 20910 KARI L ROSBECK PRESIDENT AND CEO 3015629890 2018-04-04 true JOEL C SUSCO P00189961 3012726000 2017 2022-09-23 18:48:47Z TUBEROUS SCLEROSIS ALLIANCE KARI L ROSBECK 801 ROEDER ROAD STE 750 SILVER SPRING MD 20910 5018382 false X WWW.TSALLIANCE.ORG X 1975 CA THE TS ALLIANCE IS DEDICATED TO FINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THOSE AFFECTED. 20 20 19 1667 0 4517826 3949953 629254 824241 13638 10221 46841 -41611 5207559 4742804 940040 535454 0 0 1650060 1809048 0 0 733834 2302337 2976795 4892437 5321297 315122 -578493 10004341 9757301 738137 700521 9266204 9056780 X THE NATIONAL TUBEROUS SCLEROSIS ASSOCIATION, INC., D/B/A TUBEROUS SCLEROSIS ALLIANCE, IS DEDICATED TO FINDING A CURE FOR TUBEROUS SCLEROSIS COMPLEX WHILE IMPROVING THE LIVES OF THOSE AFFECTED. false false 2752226 535454 796617 RESEARCH PROGRAM - SEE SCHEDULE O PAGE 54 773653 9774 SUPPORT SERVICES - SEE SCHEDULE O PAGE 59 322284 2600 PUBLIC HEALTH EDUCATION - SEE SCHEDULE O PAGE 62 230179 15250 4078342 true true false true false false false false false true true false false true true true false true false false true true false false true false false true false true false false false false false false false false true false false false false true false false false true 40 0 true 19 true false false false false false true true false false false false X 20 20 false false true false true true false true true false true true true true true true true true true true false AL AK AR CA CT FL GA IL IN KS KY MD MA MI MN MS NH NJ NM NY NC OK OR PA RI SC TN UT VA WV WI X X X THE ORGANIZATION 3015629890 801 ROEDER ROAD STE 750 SILVER SPRING MD 20910 X TIM DILLS CHAIR 5.0 0.0 X X 0 0 0 BETH DEAN VICE CHAIR 5.0 0.0 X X 0 0 0 DAVID FITZMAURICE IMMEDIATE PAST CHAIR 5.0 0.0 X X 0 0 0 REBECCA ANHANG PRICE SECRETARY 5.0 0.0 X X 0 0 0 JIM MAGINN TREASURER 5.0 0.0 X X 0 0 0 MARTINA BEBIN MD MPA BOARD MEMBER 2.0 0.0 X 0 0 0 JOHN J BISSLER MD BOARD MEMBER 2.0 0.0 X 0 0 0 MICHAEL CAGGIANO BOARD MEMBER 2.0 0.0 X 0 0 0 CASSANDRA CARROLL BOARD MEMBER 2.0 0.0 X 0 0 0 SARA CHIEFFO BOARD MEMBER 2.0 0.0 X 0 0 0 MARGARET COX BOARD MEMBER 2.0 0.0 X 0 0 0 BONNIE HOGUE DUFFY BOARD MEMBER 2.0 0.0 X 0 0 0 TOM GWINN BOARD MEMBER 2.0 0.0 X 0 0 0 LAURA S LUBBERS BOARD MEMBER 2.0 0.0 X 0 0 0 BRENDAN D MANNING PHD BOARD MEMBER 2.0 0.0 X 0 0 0 DAVID MICHAELS BOARD MEMBER 2.0 0.0 X 0 0 0 DARREN MILES BOARD MEMBER 2.0 0.0 X 0 0 0 DEBORA L MORITZ BOARD MEMBER 5.0 0.0 X 0 0 0 JULIE SCROGGINS BOARD MEMBER 2.0 0.0 X 0 0 0 MATTHEW SIMONIAN BOARD MEMBER 2.0 0.0 X 0 0 0 KARI L ROSEBECK PRESIDENT & CEO 54.0 1.0 X 192244 0 28504 RICHARD A GOLLUB CONTROLLER & CFO 46.5 3.5 X 147524 0 33575 STEVEN L ROBERDS CHIEF SCIENTIFIC OFFICER 45.0 0.0 X 201086 0 31043 JAYE D ISHAM VP, COMMUNICATIONS STRATEGY 45.0 0.0 X 105665 0 4406 LISA MOSS SR DIRECTOR OF DONOR RELATIONS 45.0 0.0 X 101755 0 23366 748274 0 120894 5 false true false PSYCHOGENICS INC 20 GRAMERCY PARK SOUTH NEW YORK NY 10003 RESEARCH LAB SVCS 901513 VAN ANDEL RESEARCH INSTITUTE 333 BOSTWICK AVE NE GRAND RAPIDS MI 49503 RESEARCH 133575 2 X 37803 47932 1344269 403000 2116949 115787 3949953 CONTRACT REVENUE 900099 824241 824241 824241 10150 10150 0 243 243 0 0 0 115040 114969 71 71 71 118113 1344269 160609 -42496 -42496 0 0 0 0 0 0 MISCELLANEOUS 900099 642 642 642 4742804 824241 -31390 461145 461145 0 74309 74309 0 638990 347872 219346 71772 0 932810 552836 109302 270672 27991 17634 2391 7966 105088 67352 1074 36662 104169 59589 19944 24636 0 78839 57607 21232 19500 19500 105960 105960 0 0 171240 99105 25717 46418 0 317408 120073 67225 130110 129324 43735 85589 0 94281 285 93712 284 272085 227893 3047 41145 0 242361 198367 34708 9286 0 0 69095 35516 29965 3614 8025 150 7716 159 PRECLINICAL CONSORTIUM 1042919 1042919 NATURAL HISTORY DATABASE 222524 222524 BIOSAMPLE REPOSITORY 120771 120771 OVERHEAD ALLOCATION 175714 -248016 72302 82463 46986 16669 18808 5321297 4078342 509121 733834 X 78960 39480 39480 1840325 1079000 779808 1231098 1480988 989299 262025 278373 0 0 0 0 0 0 0 0 182942 344133 372051 186050 190332 186001 0 10970 0 0 0 0 0 0 5267921 5638427 10004341 9757301 523259 472644 0 0 131976 167293 0 0 0 0 0 0 0 0 0 0 82902 60584 738137 700521 X 5303111 5975949 3083649 2201387 879444 879444 9266204 9056780 10004341 9757301 X -578493 792 368277 X false true X true false X 3239048 3124386 3514873 4517826 3949953 18346086 0 0 3239048 3124386 3514873 4517826 3949953 18346086 2725455 15620631 13335 13455 16038 15431 10393 68652 44490 44490 5984 9351 1401 1683 642 19061 18478289 4152994 0.84535 0.81282 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 1797 146199 147996 5173301 5321297 416065 104016 362797 364719 394622 416065 1538203 2307305 178975 126441 145927 146199 597542 90699 91180 98656 104016 384551 576827 905 5047 986 1797 8735 5293989 92635 739072 403000 67141 5655555 4763517 58749 525868 54145 5293989 5061299 29940 93294 202000 32428 4950105 4994766 47153 179553 97500 62673 5061299 4457365 42690 718381 197200 26470 4994766 0.84450 0.15550 false true true 156545 106502 50043 71461 19279 52182 144045 60269 83776 186001 INTEREST IN NET ASSETS OF AFFI 5655555 DUE FROM AFFILIATE -17128 5638427 0 DEFERRED RENT & LEASE INCENTIV 60584 60584 X 5186056 792 22186 823274 846252 4339804 403000 403000 4742804 5395480 22186 58708 80894 5314586 6711 6711 5321297 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: Accounting principles generally accepted in the United States of America require management to evaluate income tax positions taken and accrue an income tax liability if the organization has taken an uncertain position that more likely than not would not be sustained upon examination by the Internal Revenue Service. Management has evaluated the income tax positions taken and concluded that as of December 31, 2017 there are no uncertain positions taken or expected to be taken that would require accrual of a liability in the consolidated financial statements. The Alliance is subject to routine audits by taxing jurisdictions; however, there are currently no audits in progress for any tax periods. As of December 31, 2017 the statute of limitations for tax years 2014 through 2016 remains open with the U.S. federal jurisdiction or the various states and local jurisdictions in which the Alliance files tax returns. PART XI, LINE 2D - OTHER ADJUSTMENTS: $823,274 REVENUES FROM RELATED ORGANIZATION PART XI, LINE 4B - OTHER ADJUSTMENTS: $403,000 RELATED ORGANIZATION GRANT ELIMINATED FOR CONSOLIDATED FINANCIAL STATEMENT. PART XII, LINE 2D - OTHER ADJUSTMENTS: $ 461,708 EXPENSES FROM RELATED ORGANIZATION $(403,000) GRANT FROM RELATED ORGANIZATION ELIMINATED FOR FS PURPOSES --------- $ 58,708 ========= PART XII, LINE 4B - OTHER ADJUSTMENTS: $6,711 RETURNED GRANT FROM PRIOR YEAR true Europe (Including Iceland and Greenland) Grantmaking 74309 Europe (Including Iceland and Greenland) Program Services PRECLINICAL TESTING 34155 108464 108464 Europe (Including Iceland and Greenland) RESEARCH 74309 WIRE CASH 1 false false false false false false 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 AND IF THE GRANTEE WILL CONTINUE TO RECEIVE FUNDING. A FINAL WRITTEN AND FINANCIAL REPORT IS REQUIRED OF ALL GRANTEES. WALKS 926266 866266 60000 48476 18712 4503 4362 COMEDY FOR CURE 200433 175972 24461 74 11236 26413 1500 10 335683 302031 33652 3942 16729 24356 306 1462382 1344269 118113 52492 46677 55272 6168 160609 -42496 true BRIGHAM & WOMEN'S HOSPITAL 75 ST FRANCIS STREET BOSTON MA 02115 042312909 501(C)(3) 75000 RESEARCH GRANTS UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER 5323 HARRY HINES BLVD DALLAS TX 75287 756002868 501(C)(3) 75000 RESEARCH GRANT BOSTON CHILDREN'S HOSPITAL PO BOX 414413 BOSTON MA 02241 042774441 501(C)(3) 131145 RESEARCH GRANTS PRESIDENT & FELLOWS OF HARVARD COLLEGE PO BOX 415649 BOSTON MA 02241 042103580 501(C)(3) 100000 RESEARCH GRANT THE REGENTS OF THE UNIVERSITY OF CALIFORNIA 2150 SHATTUCK AV 300 BERKELEY CA 94704 946002123 501(C)(3) 75000 RESEARCH GRANT 5 PART I, LINE 2: THE TS ALLIANCE HAS FUNDED MORE THAN $20.3 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 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 FELLOWSHIPS - TSC RESEARCH GRANTS 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 GRANT REVIEW COMMITTEE'S CONCLUSIONS AND MAKES FUNDING 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 false false false true false true false false false KARI L ROSEBECK PRESIDENT & CEO 169094 0 23012 138 5945 0 25248 0 223437 0 0 0 RICHARD A GOLLUB CONTROLLER & CFO 129671 0 17457 396 4647 0 31617 0 183788 0 0 0 STEVEN L ROBERDS CHIEF SCIENTIFIC OFFICER 177431 0 23517 138 6234 0 27498 0 234818 0 0 0 PART I, LINE 5A: KARI LUTHER ROSBECK, RICHARD GOLLUB, STEVE ROBERDS, JAYE ISHAM AND LISA MOSS 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 6A: KARI LUTHER ROSBECK, RICHARD GOLLUB, STEVE ROBERDS, JAYE ISHAM AND LISA MOSS ALL HAVE INCENTIVE COMPENSATION EQUAL TO A PERCENTAGE OF THEIR SALARIES BASED ON KEY PERFORMANCE OBJECTIVES AS ESTABLISHED BY THE COMPENSATION COMMITTEE. PART I & PART II: KARI LUTHER ROSBECK AND RICHARD GOLLUB ARE EMPLOYEES OF TUBEROUS SCLEROSIS ALLIANCE AND ARE COMPENSATED THROUGH TS ALLIANCE. THESE INDIVIDUALS SERVE THE ENDOWMENT WITHOUT COMPENSATION. X 11 115040 FMV X MISCELLANEOUS ITEMS 2 747 DONOR'S VALUE false false false FORM 990, PART III, LINE 4A, RESEARCH PROGRAM: 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. Directed by Steven L. Roberds, PhD, Chief Scientific Officer, the TS Alliance research 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. The TS Alliance has funded more than $20.3 million in research grants on TSC since 1984. Through the TS Alliance research grants program, applications can be submitted for postdoctoral fellowships and research grants. 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. A total of 8 research awards were funded during 2017. In 2016, Dr. Peter Davis (Boston Childrens Hospital) was awarded one year of funding to study brain network biomarkers of epilepsy in TSC to identify those at highest risk of developing seizures. In 2017, he applied for and was granted an additional year of funding to extend his work to correlate EEG network biomarkers with epilepsy severity and treatment response. The Board of Directors approved funding to begin in 2018 for three additional projects. Also in 2017, we continued to support six research grants awarded in previous years. 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 2017, 2,124 people with TSC 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 2017, the TS Alliance invested $222,524 in the TSC Natural History Database and implemented sub-projects on TAND and epilepsy while continuing sub-projects on renal angiomyolipomas and subepyndymal giant cell astrocytomas to address detailed questions about these life-threatening manifestations of TSC. A contract with Novartis executed in November 2012 provided TS Alliance with funding to enhance and grow the depth of data in the TSC Natural History Database through 2018. 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. 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 TSC Biosample Repository ended 2017 with 397 biosamples: 251 blood, buccal cell, or tissue samples from individuals with TSC enrolled in the TSC Natural History Database, and an additional 146 samples from the Rare Disease Clinical Research Networks Developmental Synaptopathies Consortium and the Preventing Epilepsy Using Vigabatrin in Infants with Tuberous Sclerosis Complex (PREVeNT) clinical trial. Samples in the repository are linked to detailed clinical data in our existing TSC Natural History Database and are available to qualified researchers worldwide. Samples are housed at and distributed from the Van Andel Institute in Grand Rapids, Michigan, under control of the TS Alliance. The TS Alliance launched the TSC Preclinical Consortium in 2015, which enables prioritization of candidate treatments 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 licenses to use specific TSC mouse models for experiments carried out by the Preclinical Consortium, and all mouse license agreements include the rights for the TS Alliance to perform experiments under contract for commercial entities. This ensures data generated by the Preclinical Consortium can be used to accelerate the development of new treatments by commercial entities as well as academic investigators. The consortium began running epilepsy experiments in August 2016 at PsychoGenics, a contract research organization. Tumor experiments began in August 2017 at Porsolt, another contract research organization. Three pharmaceutical companies joined the Preclinical Consortium in 2017, bringing the total to six industry partners. The TSC Preclinical Research Consortium ran ten studies in 2017, compared to just four in 2016. Some of the consortiums early results were shared by TS Alliance and PsychoGenics scientists at the National Organization for Rare Disorders conference, the Society for Neuroscience annual meeting, and the American Epilepsy Society annual meeting in Washington, DC. 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 consortiums success in obtaining NIH funding. Now consisting of seven sites - Boston Childrens Hospital, Cincinnati Childrens Hospital, the University of Alabama at Birmingham, the University of Texas Health Science Center at Houston, UCLA, Stanford University, and Minnesota Epilepsy Group - the consortium has received $29 million in competitive grant funding from the National Institutes of Health (NIH) to support clinical studies in TSC. The Clinical Research Consortium is making history with the PREVeNT trial - preventing epilepsy using vigabatrin in infants with tuberous sclerosis complex. PREVeNT is the first preventative trial for any form of epilepsy in the US and began enrolling participants in December 2016. The PREVeNT trial builds directly upon the Consortiums first clinical study from which interim results have been published (www.ncbi.nlm.nih.gov/pubmed/26498039) showing that all infants who developed abnormal activity on EEGs went on to develop seizures. This trial will determine whether treatment with vigabatrin prior to the onset of clinical seizures in TSC is beneficial to childrens developmental and neurologic outcomes. The TS Alliances Chief Scientific Officer serves on the consortiums leadership team. The TS Alliance and The LAM Foundation jointly sponsored the 2017 International Research Conference on TSC and LAM: Innovating through Partnerships, held June 22-24, 2017, at the Hyatt Regency Capitol Hill in Washington, DC. More than 200 people, including 183 professional attendees from 27 countries, participated in scientific sessions featuring oral presentations, a poster session, and working groups of researchers tackling specific issues related to genetic, multidisciplinary clinical care, and translational research strategies. The conference concluded with a joint session including individuals and families affected by tuberous sclerosis complex (TSC) and lymphangioleiomyomatosis (LAM). This session highlighted how quickly the fields of TSC and LAM treatment are moving and emphasized the need for further collaboration between individuals with TSC or LAM and their families, clinicians and researchers to accelerate the development of greatly improved treatments for these disorders. EXPENSES $2,752,226. INCLUDING GRANTS OF $535,454 REVENUES $796,617. FORM 990, PART III, LINE 4B, SUPPORT SERVICES: Support 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 Support Services Department provided support and resources to 3,547 individuals and families dealing with TSC throughout 2017. The Vice President, Support Services attended 74 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. Through collaborations with the Parent Training and Information Centers in 2017, 3,005 free parent trainings/webinars on educational advocacy were offered to families in 32 states dealing with educational issues for their children. In addition, 128 school systems offered the support of the Educator Mentor Program in 2017. The Vice President, Support Services provided four school systems with training on "TSC and Learning" to hlep provide better educational outcomes for students with TSC. Through a network of 37 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 57 educational meetings and gatherings throughout the year. In 2017, the TS Alliance of Maryland was launched, and the TS Alliance of DC Metro and TS Alliance of Virginia were merged to reflect the overlapping constituencies. The TS Alliance facilitated 20,247 peer-to-peer supports from Adult Regional Coordinators, Clinic Ambassadors, Dependent Adult Transition Resource Coordinators, and through the Community Alliances. In 2017, the TS Alliance hosted two Regional TSC and LAM Conferences in Houston, TX and Washington, DC with 118 combined attendees. These conferences, co-hosted by The LAM Foundation, 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 and LAM can make informed decisions when evaluating treatment options. These one-day symposiums offered educational outreach, information on the latest treatments in TSC and LAM, research updates, and support options. Regional TSC and LAM Conferences provide much-needed forums for the growing number of people facing the daily challenges of TSC. The TS Alliance also held two Transition Workshops in New York, NY and San Diego, CA. The combine dattendance at these workshops was 58. The goal of these all-day transition workshops was to give parents and caregivers tangible resources to empower them with resources, clear timelines and next steps to develop an effective transition plan for their children. The TS Alliance partnered with Arc USA, Child Neurology Foundation and Mass Mutual because these organizations have pre-existing tools and best practices to assist through different aspects of the transition plan, and their expertise was vital to families in attendance. Global Outreach works to address unmet needs within the global TSC community. The program provides the opportunity for the TS Alliance to share experiences and assist in the start-up of support of TSC-related organizations in other countries. A global alliance is a structured group of empowered and caring volunteers who work closely with the TS Alliance to facilitate local connections for individuals and families affected by TSC, and raise revenue and awareness while supporting the mission of the organization. In 2017, the TS Alliance signed a global agreement with the Hungarian Foundation for Tuberous Sclerosis. The TS Alliance now has five global partnerships, including: TS Alliance of Israel, TS Canada ST, TS Alliance of Mexico, TS Alliance Foundation (in Thailand) and the Hungarian Foundation for Tuberous Sclerosis. EXPENSES $773,653. INCLUDING GRANTS OF $-0- REVENUES $9,774. FORM 990, PART III, LINE 4C, PUBLIC HEALTH EDUCATION: 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 2017, the TS Alliance produced three issues of its national magazine, Perspective, which is mailed to almost 17,000 constituents as well as posted on the website. The TS Alliances website increases awareness and provides extensive education through an average of more than 30,000 unique visitors each month. The TS Alliance also relies heavily on social media to educate constituents and promote new resources and events. Its Facebook Group boasts more than 8,600 members, while its Twitter account has 1,800-plus followers. To increase public awareness, the TS Alliance once again participated in TSC Global Awareness Day on May 15 as well as TSC Awareness Month thoughout May; a TSC Global Awareness Day news release garnered 12.1 million impressions. The TS Alliance again heavily promoted Infantile Spasms Awareness Week, December 1 to 7. This awareness campaign included targeted social media outreach and a satellite media tour, which gained coverage from 16 media outlets reaching a potential of 1.2 million. A news release about the TS Alliance's "Voice of the Patient Report" being submitted to the FDA resulted in 18.8 million media impressions. EXPENSES $322,284. INCLUDING GRANTS OF $-0- REVENUES $2,600. FORM 990, PART III, LINE 4D, OTHER PROGRAM SERVICES: 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 late February 2017. More than 100 members of the TSC community participated and asked their senators and representatives to sign onto Dear Colleague letters in support of the TSCRP. Many other advocates who were not able to travel to Washington, DC met with their senators and representatives in their home states to make the case for continued funding. In the House, 160 Democratic and Republican Representatives signed a bipartisan Dear Colleague letter of support from Representatives Dave Loebsack (D-IA) and Ileana Ros-Lehtinen (R-FL). The Senate letter was sponsored by Senators Chris Murphy (D-CT) and Johnny Isakson (R-GA) and ended with 24 signatures. In FY2017, the TSC Research Program at the CDMRP received a $6 million appropriation, bringing the cumulative funding to $71 million since 2002 as a result of our successful grassroots efforts. Funding for FY2018 is pending on Congress passing the FY2018 budget but is currently included in the Houses 2018 Defense Appropriations Act at $6 million. Research performed 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; 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, called 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 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. Based on data from TSCRP-funded animal models of TSC that have seizures and share pathology related to that of traumatic brain injury, an industry-sponsored clinical trial demonstrated the effectiveness the mTOR inhibitor, everolimus, at treating epilepsy in many 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, in partnership with the Infantile Spasms Action Network, on Capitol Hill on December 5, 2017. Congressional staff and key members of the TSC research and grassroots communities attended the event. 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 36 professional meetings including: American Thoracic Society and the ATS Leadership Summit; Child Neurology Society; Society for Neuroscience; National Arc Convention; Global Geners; NINDS Biomarkers Workshop; NICHD Workshop "Looking to the Future: The Next 50 Years of Intellectual and Developmental Disabilities Research Trans-NIH TSC meeting; Health Research Alliance members meetings; Research Roundtable in Epilepsy; Association of Clinical Research Professionals; Externally-Led Patient Focused Drug Development Meeting on TSC and LAM; International Research Conference on TSC and LAM; TSC/LAM Regional Conference in Houston; PKD Foundation; ICARE (Interagency Collaborative to Advance Research in Epilepsy); NINDS Nonprofit Forum; NCATS Toolkit for Patient-Focused Therapy Development; FDA CDER Public Workshop: Strategies, Tools, and Best Practices for Effective Advocacy in Rare Diseases Drug Development; Children's Tumor Foundation Research Consortium; Epilepsy Foundations Cannabinoid Signaling in Epilepsy workshop; World Orphan Drug Congress; NORD Orphan Products and Breakthrough Summit; Simons Foundation workshop on patient registries for neurodevelopmental disorders; Open Research Funders Group; BIO Patient Health and Advocacy Summit; the Arc National Convention; Infantile Spasms Action Network; REN Outcomes in Epilepsy Workshop; Refractory Epilepsy in Children at Sourasky Medical Center in Israel; LGS Family Conference; and The LAM Foundation Patient Benefit Conference and LAMposium LA. In addition, at the American Epilepsy Society meeting the TS Alliance presented in the Discovery Center and the poster session, and hosted more than 100 guests at a reception for TSC researchers. At the conference the TS Alliance also participated in a Special Interest Group meeting on TSC. In addition, the Vice President, Support Services continues to collaborate with national educational networks, including The Arc USA, Parent Training Information Centers across the country and the Association for Middle Level Education. EXPENSES $230,179. INCLUDING GRANTS OF $-0- REVENUES $15,250. FORM 990, PART VI, SECTION A, LINE 4: THE BYLAWS OF NATIONAL TUBEROUS SCLEROSIS ASSOCIATION, INC. WERE AMENDED AS OF OCTOBER 2017 FOR THE FOLLOWING: 1. UPDATED THE LANGUAGE REGARDING ESTABLISHMENT AND TERMS OF MEMBERSHIP IN THE ORGANIZATION, THE RENEWAL PROCESS FOR MEMBERSHIP AND THAT "LIFETIME MEMBERS" ARE NOT REQUIRED TO SUBMIT MEMBERSHIP RE-APPLICATIONS. 2. CREATED NEW SECTION UNDER ORGANIZATION AND MEMBERSHIP TO RECLASS THE MANNER OF MEMBER VOTING AND EXPANDED THE LANGUAGE ON THE VOTING PROCESS. 3. CREATED NEW SECTION UNDER ORGANIZATION AND MEMBERSHIP FOR MEETINGS CONDUCTED BY ELECTRONIC TRANSMISSION. 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 ALLOWED INDIVIDUALS TO STATE THEIR INTENT TO BE A MEMBER FOR THE PURPOSE OF GOVERNANCE. THERE WERE NO LEVELS TO MEMBERSHIP IN 2017. ANYONE CAN BE A MEMBER AT NO COST. FORM 990, PART VI, SECTION B, LINE 11: THE FORM 990 IS REVIEWED, IN DETAIL, BY THE BOARD OF DIRECTORS' AUDIT COMMITTEE. RECOMMENDATIONS ARE MADE BY THE COMMITTEE MEMBERS FOR ANY CHANGES/EDITS/ADDITIONS. AFTER THOSE HAVE BEEN INCORPORATED, THE AUDIT COMMITTEE VOTES WHETHER TO APPROVE AND THEN FORWARD THE 990 TO THE FINANCE AND EXECUTIVE COMMITTEES. THE FINANCE AND EXECUTIVE COMMITTEES PERFORM THE FINAL REVIEW AND THEN VOTE 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 MEMBER 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 2017: BOARD MEMBER BRENDAN MANNING, PH.D, IS EMPLOYED AT HARVARD COLLEGE, WHICH RECEIVED $100,000 ROTHBERG COURAGE AWARD GRANT TO STUDY REPURPOSING APPROVED INHIBITORS OF PURINE SYNTHESIS FOR TSC TREATMENT. BOARD MEMBER MARTINA BEBIN, MD IS EMPLOYED BY THE UNIVERSITY OF ALABAMA BIRMINGHAM, WHICH RECEIVED A $6,700 FEE FOR SERVICE FOR ENTERING DATA INTO THE NATURAL HISTORY DATABASE AND A $5,000 GRANT TO PROVIDE TRANSPORTATION TO PARTICIPANTS IN THE PREVENT STUDY. COMMITTEE MEETING AND BOARD MEETING WILL DULY RECORD SUCH ACTIONS. 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. FORM 990, PART XI, LINE 9, CHANGES IN NET ASSETS: $361,566 CHANGE IN INTEREST IN AFFLIIATE $ 6,711 PRIOR YEAR GRANT RETURNED -------- $368,277 TOTAL OTHER CHANGES IN NET ASSETS ======== FORM 990, PART XII, LINE 2C THE AUDIT REVIEW PROCESS HAS REMAINED UNCHANGED FROM THE PRIOR YEAR. TUBEROUS SCLEROSIS ALLIANCE ENDOWMENT FD 801 ROEDER ROAD STE 750 SILVER SPRING MD 20910 521926919 SUPPORT ORG MD 501(C)(3) 11B, III false false false true false false false false false false false false false false true true false false false false TUBEROUS SCLEROSIS ALLIANCE ENDOWMENT FUND C 403000 CASH