2017-04-17T08:47:57-05:00 2016-12-31 BOND BEEBE PC 4600 EAST-WEST HIGHWAY SUITE 900 BETHESDA MD 208143423 990 2016-01-01 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 2017-04-07 true LAWRENCE J HOFFMAN P00167087 3012726000 66.195.210.98 52746520171075000021 2017-04-17 P 483B3F99E9CD71719F6CCAA667530D61A598C20D 483B3F99E9CD71719F6CCAA667530D61A598C20D 2016 2021-01-29 14:40:06Z TUBEROUS SCLEROSIS ALLIANCE KARI L ROSBECK 801 ROEDER ROAD STE 750 SILVER SPRING MD 20910 5334129 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. 19 19 17 1566 0 3514873 4517826 478813 629254 13679 13638 1071 46841 4008436 5207559 488698 940040 0 0 1544461 1650060 0 0 635871 1877431 2302337 3910590 4892437 97846 315122 8707847 10004341 287236 738137 8420611 9266204 X 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. false false 2469977 887095 599604 Research Program stimulates and supports basic, translational, and clinical research on the various manifestations of tuberous sclerosis complex (TSC) to further the development of clinical therapies and, ultimately, a cure for TSC. The TS Alliance has funded more than $19.7 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 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. 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 2016, 2,070 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 2016, the TS Alliance invested $431,054 in the TSC Natural History Database and implemented 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 was extended to provide TS Alliance with funding to enhance and grow the depth of data in the TSC Natural History Database through 2018. A total of 15 research awards were funded during 2016 for $887,095. The TS Alliance continued to support eight research grants awarded in previous years. Additionally, seven new research awards were funded beginning in 2016 to (1) Dr. Heng-Jia Liu (Brigham and Womens Hospital) for a postdoctoral fellowship to study T-cell dysfunction in TSC, (2) Dr. Peter Davis (Boston Childrens Hospital) to study brain network biomarkers of epilepsy in TSC, (3) Dr. Jonathan Lipton (Boston Childrens Hospital) to study the circadian clock as a capacitor for TSC-related phenotypes, (4) Dr. Mark Nellist (Erasmus Universitair Medisch Centrum Rotterdam) to functionally characterize TSC1 and TSC2 variants associated with TSC, (5) Dr. Carmen Priolo (Brigham and Womens Hospital) to study the lysophosphatidic acid pathway in TSC, (6) Dr. Peter Tsai (University of Texas Southwestern Medical Center) to study the impact of cerebellar-medial prefrontal cortical circuits in TSC, and (7) Dr. Darcy Krueger (Cincinnati Childrens Hospital Medical Center) to develop a clinical protocol to test the ability of mTOR inhibitors to prevent manifestiations of TSC. With the eight ongoing grants, the TS Alliance continued supporting (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, (3) Dr. Mustafa Sahin (Boston Children's Hospital) to study the "hedgehog" gene and ciliary signaling in TSC, (4) Dr. Sue Povey (University College London) to curate additional mutations in TSC1 and TSC2 genes and make them openly available to the public in a database that is highly utilized by genetic researchers in TSC, (5) Dr. Wei Shi (Childrens Hospital, Los Angeles) to develop and test a novel mouse model of LAM, (6) Dr. Gerta Hoxhaj (Harvard School of Public Health) to study the role of the protein TBC1D7 in cell migration in neurons and angiomyolipomas, (7) Dr. Michael Higley (Yale University) to learn how loss of TSC1 disrupts brain signaling circuits in mice, and (8) Dr. Mustafa Sahin (Boston Childrens Hospital) for supplemental support of imaging analysis in the Rare Diseases Clinical Research Network. 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 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. 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 TSC Biosample Repository has collected 176 blood samples from voluntary participants enrolled in the TSC Natural History Database at Texas Scottish Rite Hospital, Nicklaus Childrens Hospital in Miami, and Minnesota Epilepsy Group, and from RDCRN participants at Boston Childrens Hospital, Cincinnati Childrens Hospital, the University of Alabama at Birmingham, University of Texas Health Science Center at Houston, and UCLA. 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. 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 that data generated by the Preclinical Consortium can be used to accelerate the development of new treatments by commercial entities as well as academic investigators. Three pharmaceutical companies joined the Preclinical Consortium in 2016. Additionally, four other companies have expressed serious interest. The consortium began running epilepsy experiments in August 2016 at a contract research organization, PsychoGenics, Inc. 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 NATIONAL INSTITUTES OF HEALTH (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 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 is on the consortiums leadership team. 780145 52945 10250 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 3,307 individuals and families dealing with TSC throughout 2016. The Vice President of Outreach attended 65 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 2016, 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 2,344 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 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 76 educational meetings and gatherings. Among these 76 meetings was a 13-meeting Town Hall educational series. The series highlighted transition services offered by The Arc. These Town Hall meetings were hosted in TSC clinics and other venues across the United States with 160 people attending. One new Community Alliance, the TS Alliance of Kentucky/West Virginia, was added in 2016. The TS Alliance facilitated 13,540 peer-to-peer supports from Adult Regional Coordinators, Clinic Ambassadors and Dependent Adult Transition Resource Coordinators and through Community Alliance meetings. In 2016, the TS Alliance hosted three Regional TSC Conferences in partnership with The LAM Foundation held in Nashville, TN; Seattle, WA; and Cleveland, OH with 247 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 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. They featured the regions top experts and in a nurturing, supportive environment. Regional TSC Conferences provide much-needed forums for the growing number of people facing the daily challenges of TSC and LAM. To address unmet needs within the global TSC Community, the TS Global Alliance program was launched in 2014 with the TS Alliance of Israel. 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 2016, the TS Alliance signed global agreements with TS Canada ST, TS Alliance of Mexico and the TS Alliance ASEAN Foundation and issued grants of $52,945 to global alliance partners. 293296 1500 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 2016, 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 Alliances website increases awareness and provides extensive education through an average of more than 40,000 unique visitors each month; the site was completely redesigned in 2016 and launched December 14. The TS Alliance also relies heavily on social media to educate constituents and promote new resources and events. Its Facebook Group boasts more than 7,800 members, while its Twitter account has 1,600-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 13.6 million impressions. The TS Alliance again heavily promoted Infantile Spasms Awareness Week with 16 partner organizations, December 1 to 7. This awareness campaign included social media, advertising to first line physicians and parents, and a media tour. Facebook advertising to reach misdiagnosed or those seeking a diagnosis reached 272,936 people. Advertising to first line physicians included an American College of Emergency Physicians newsletter ad with 37,249 subscribers and an American Academy of Pediatrics News ad reaching 64,805 readers. The satellite media tour with 33 aired interviews (21 TV/12 radio) reached a total audience of 6.1 million (309,712 broadcast 5,801,947 radio). 211911 17900 3755329 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 false false false false false true false false true 35 0 true 17 true false false false false false true true false false false false X 19 19 false false false false true true false true true false true true true true true true true true true true false AL AZ AR CA CT FL GA HI IL IN KS KY ME MD 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 DAVID FITZMAURICE CHAIR 5.0 0.0 X X 0 0 0 TIM DILLS VICE CHAIR 5.0 0.0 X X 0 0 0 LAURA S LUBBERS IMMEDIATE PAST CHAIR 5.0 0.0 X X 0 0 0 BETH DEAN SECRETARY 5.0 0.0 X X 0 0 0 DARREN MILES TREASURER 5.0 0.0 X X 0 0 0 REBECCA ANHANG PRICE BOARD MEMBER 2.0 0.0 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 APRIL COOPER BOARD MEMBER 2.0 0.0 X 0 0 0 BONNIE HOGUE DUFFY BOARD MEMBER 2.0 0.0 X 0 0 0 KEITH A HALL BOARD MEMBER 2.0 0.0 X 0 0 0 JIM MAGINN BOARD MEMBER 2.0 0.0 X 0 0 0 BRENDAN D MANNING PHD BOARD MEMBER 2.0 0.0 X 0 0 0 THEODORE MASTROIANNI BOARD MEMBER 2.0 0.0 X 0 0 0 DAVID MICHAELS BOARD MEMBER 2.0 2.0 X 0 0 0 DEBORA L MORITZ 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 170716 0 26641 RICHARD A GOLLUB CONTROLLER & CFO 46.5 3.5 X 132717 0 30661 STEVEN L ROBERDS CHIEF SCIENTIFIC OFFICER 45.0 0.0 X 184985 0 29172 JAYE D ISHAM VP, COMMUNICATIONS STRATEGY 45.0 0.0 X 100926 0 3670 589344 0 90144 4 false true false CAVAROCCHI RUSCIO DENNIS ASSOCIAT 600 MARYLAND AVE SW STE 835W WASHINGTON DC 20024 GOVT RELATIONS 103884 1 X 36891 9045 1284683 3187207 19494 4517826 CONTRACT REVENUE 900099 629254 629254 629254 14763 14763 0 668 668 0 0 0 20269 19494 1900 775 -1900 -1125 -1125 149666 1284683 105176 44490 44490 0 0 MISCELLANEOUS 900099 1683 1683 1683 5207559 629254 60479 748650 748650 0 191390 191390 0 580223 315695 201956 62572 0 863353 490279 125398 247676 27060 16808 2984 7268 82706 53411 515 28780 96718 55027 19893 21798 0 51675 33241 15684 2750 27915 27915 104376 104376 0 0 112001 71314 7391 33296 0 318858 136411 77990 104457 118628 25916 92712 0 81757 270 81217 270 218353 169816 2496 46041 0 135409 105535 27503 2371 0 0 50471 3147 47324 7348 7348 PRECLINICAL CONSORTIUM 492760 492760 NATURAL HISTORY DATABASE 431054 431054 BIOSAMPLE REPOSITORY 82925 82925 OVERHEAD ALLOCATION 188625 -262909 74284 68807 38679 25820 4308 4892437 3755329 501237 635871 X 104180 52090 52090 2873836 1840325 499163 779808 316197 1480988 2450 262025 0 0 0 0 0 0 0 0 107800 182942 360151 169819 146437 190332 0 0 0 0 0 0 0 0 4761964 5267921 8707847 10004341 270808 523259 0 0 16428 131976 0 0 0 0 0 0 0 0 0 0 0 82902 287236 738137 X 5643768 5303111 1897399 3083649 879444 879444 8420611 9266204 8707847 10004341 X 315122 530471 X X false true X true false X 3199643 3239048 3124386 3514873 4517826 17595776 0 0 3199643 3239048 3124386 3514873 4517826 17595776 3168321 14427455 9794 13335 13455 16038 15431 68053 44490 44490 23048 5984 9351 1401 1683 41467 17749786 3531539 0.81282 0.85040 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 986 145927 146913 4745524 4892437 394622 98656 354161 362797 364719 394622 1476299 2214449 142520 178975 126441 145927 593863 88540 90699 91180 98656 369075 553613 919 905 5047 986 7857 4763517 58749 525868 54145 5293989 5061299 29940 93294 202000 32428 4950105 4994766 47153 179553 97500 62673 5061299 4457365 42690 718381 197200 26470 4994766 4221150 43996 420983 202000 26764 4457365 0.81390 0.16610 0.02000 false true true 156545 84224 72321 19886 8450 11436 183720 77145 106575 190332 INTEREST IN NET ASSETS OF AFFI 5293962 DUE FROM AFFILIATE -26041 5267921 0 DEFERRED RENT & LEASE INCENTIVE 82902 82902 X 5794361 161688 26947 398167 586802 5207559 5207559 4948768 26947 29384 56331 4892437 4892437 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, 2016 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, 2016 the statute of limitations for tax years 2013 through 2015 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: $398,167 REVENUES FROM RELATED ORGANIZATION PART XII, LINE 2D - OTHER ADJUSTMENTS: $29,384 EXPENSES FROM RELATED ORGANIZATION true Europe (Including Iceland and Greenland) Grantmaking 138445 North America Grantmaking 25000 East Asia and the Pacific Grantmaking 27945 191390 191390 Europe (Including Iceland and Greenland) RESEARCH 63445 CHECK & WIRE CASH Europe (Including Iceland and Greenland) RESEARCH 75000 WIRE CASH North America RESEARCH 25000 WIRE CASH East Asia and the Pacific RESEARCH 24000 WIRE CASH 2 3 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 IF THE GRANTEE ORGANIZATION WILL CONTINUE TO RECEIVE FUNDING. A FINAL WRITTEN AND FINANCIAL REPORT IS REQUIRED OF ALL GRANTEES. walks 1052858 937858 115000 25309 20104 4664 4709 comedy for cure 199449 174127 25322 196 9885 25449 1186 9 182042 172698 9344 1168 200 11574 732 1434349 1284683 149666 26673 30189 41687 6627 105176 44490 true BRIGHAM & WOMEN'S HOSPITAL 75 ST FRANCIS STREET BOSTON MA 02115 042312909 501(C)(3) 68750 RESEARCH GRANTS HARVARD TH CHAN SCHOOL OF PUBLIC HEALTH PO BOX 415649 BOSTON MA 02241 042103580 501(C)(3) 100000 RESEARCH GRANT UC BERKELEY 2150 SHATTUCK AVE 300 BERKELEY CA 94704 946002123 501(C)(3) 75000 RESEARCH GRANT UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER 5323 HARRY HINES BLVD DALLAS TX 75287 756002868 501(C)(3) 18750 RESEARCH GRANT BOSTON CHILDREN'S HOSPITAL RSRCH FIN PO BOX 414413 BOSTON MA 02241 042774441 501(C)(3) 225000 RESEARCH GRANTS AMERICAN EPILEPSY SOCIETY 135 SOUTH LASALLE ST CHICAGO IL 60603 046112600 501(C)(3) 40000 RESEARCH GRANT CHILDREN'S HOSPITAL LOS ANGELES 4650 SUNSET BLVD LOS ANGELES CA 90027 959121916 501(C)(3) 56250 RESEARCH GRANT CHILDREN'S HOSPITAL MEDICAL CENTER 3333 BURNET AVENUE CINCINNATI OH 45229 310833936 501(C)(3) 50000 RESEARCH GRANT PRESIDENT & FELLOWS OF HARVARD COLLEGE PO BOX 415649 BOSTON MA 042103580 042103580 501(C)(3) 56250 RESEARCH GRANT YALE UNIVERSITY PO BOX 1873 NEW HAVEN CT 06508 060646973 501(C)(3) 56250 RESEARCH GRANT 9 PART I, LINE 2: THE TS ALLIANCE HAS FUNDED MORE THAN $19.7 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 159924 0 10792 5296 0 24028 0 200040 0 0 0 RICHARD A GOLLUB CONTROLLER & CFO 124917 0 7800 4191 0 29153 0 166061 0 0 0 STEVEN L ROBERDS CHIEF SCIENTIFIC OFFICER 172812 0 12173 5747 0 26108 0 216840 0 0 0 PART I, LINE 5A: KARI LUTHER ROSBECK, RICHARD GOLLUB, STEVE ROBERDS AND JAYE ISHAM 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 AND JAYE ISHAM 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. 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 early March 2016. 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 back in their home states to make the case for continued funding. In the House, 165 Democratic and Republican Representatives signed a bipartisan Dear Colleague letter of support from Representatives Loretta Sanchez (D-CA) and Mike Fitzpatrick (R-PA). The Senate letter was sponsored by Senators Chris Murphy (D-CT) and Johnny Isakson (R-GA) and ended with 25 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. Funding for FY2017 is pending on Congress passing the FY2017 budget but is currently included at $6 million. A $2 million increase over past years was added as an amendment put forth by Rep. Fitzpatrick during the House floor debate on the Defense Appropriations Act on June 15, 2016, but was removed in conference committee. 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 on Capitol Hill on March 2, 2016. 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 27 professional meetings including: The Child Neurology Society Meeting; LAMposium and the LAM and Rare Lung Disease Conference; World Orphan Drug Congress; Association of Clinical Research Professionals Conference; Interagency Collaborative To Advance Research In Epilepsy (ICARE); FDA Patient Engagement Workshop; Partners Against Mortality in Epilepsy (PAME) Conference; 2016 Vancouver TSC Educational Conference in British Columbia; The NINDS Nonprofit Forum; Disability Policy Seminar; the Indication Expansion and Drug Repurposing Summit; CBIs Patient Registries Summit; 3rd Rare Disease Collaborative Summit hosted by EXL Events; Society for Neuroscience Annual Meeting; BIO Patient and Health Advocacy Summit; NORD Summit; the International TSC Research Conference in Portugal; 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. EXPENSES $211,911. INCLUDING GRANTS OF $-0- REVENUES $17,900. 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 2016. 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 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 2016: 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 $19,800 FEE FOR SERVICE FOR ENTERING DATA INTO THE NATURAL HISTORY DATABASE. 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: CHANGE IN INTEREST IN AFFLIIATE $530,471. 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 N/A false false false false false false false false false false false false false false true true false false false false