2022-03-09T07:24:59-06:00 2021-06-30 521446779 JOHNSON LAMBERT LLP 4242 SIX FORKS ROAD SUITE 1500 RALEIGH NC 27609 990 2020-07-01 520856660 EPILEPSY FOUNDATION OF AMERICA EPIL 8003321000 3540 CRAIN HIGHWAY NO 675 BOWIE MD 20716 PHILIP M GATTONE PRESIDENT AND CEO 8003321000 2022-03-09 1 PHILIP GATTONE 999009999 J CALVIN MARKS P01226973 9197196400 2 AAL1 IAL1 2020 2022-09-23 18:48:47Z LAURA THRALL 3540 CRAIN HIGHWAY NO 675 BOWIE MD 20716 22617335 0 X WWW.EPILEPSY.COM X 1967 DE WE IMPROVE AND SAVE LIVES THROUGH COMMUNITY SERVICES, EDUCATION, ACCESS TO CARE, AND RESEARCH. 21 21 140 100 0 0 28589224 18909147 650798 619665 422140 721244 -1066925 -850685 28595237 19399371 3441902 813677 0 0 11951114 8791062 170200 212750 1902750 9893231 9043395 25456447 18860884 3138790 538487 25795769 21589131 6443803 4642910 19351966 16946221 X TO LEAD THE FIGHT TO OVERCOME THE CHALLENGES OF LIVING WITH EPILEPSY AND TO ACCELERATE THERAPIES TO STOP SEIZURES, FIND CURES, AND SAVE LIVES. 0 0 8632329 37516 386323 ADVOCACY FOR INDIVIDUALS, FAMILIES AND COMMUNITIES - THE FOUNDATION IS ON THE FRONT LINES HELPING ENSURE ALL PEOPLE LIVING WITH EPILEPSY AND SEIZURES, AND THEIR FAMILIES AND COMMUNITIES, RECEIVE THE BEST POSSIBLE SERVICES AND CARE. THE FOUNDATION DEVELOPS NATIONWIDE PROGRAMS AVAILABLE THROUGH ITS NETWORK OF NEARLY 50 LOCAL EPILEPSY FOUNDATIONS AND ALSO ON EPILEPSY.COM. PROGRAMS AND INITIATIVES FOCUS ON ENGAGING PARENTS, CHILDREN AND ADULTS IN IMPROVING THEIR QUALITY OF LIFE. THE FOUNDATION ALSO HAS PROGRAMS DEDICATED TO ENDING EARLY DEATH FROM EPILEPSY AND IN IMPROVING OVERALL WELLNESS. THE PROGRAMS ARE DESIGNED TO BE CULTURALLY AND ETHNICALLY DIVERSE. THE FOUNDATION AND ITS GRASSROOTS VOLUNTEERS ACROSS THE COUNTRY ADVOCATE AT THE FEDERAL AND STATE LEVELS TO SECURE FUNDING FOR EPILEPSY PROGRAMS. 3577671 233342 PUBLIC HEALTH, EDUCATION AND AWARENESS - THE FOUNDATION LEADS THE FIGHT TO END EPILEPSY BY CREATING AWARENESS THROUGH NATIONAL MEDIA OUTREACH WITH TRADITIONAL AND DIGITAL CHANNELS INCLUDING EPILEPSY.COM AND SOCIAL MEDIA AND THROUGH THE DIRECT MAIL PROGRAM WHICH SERVES THE DUAL PURPOSE OF RAISING FUNDS FOR THE ORGANIZATION AND INCREASING AWARENESS OF THEFOUNDATION'S CAUSE. THE FOUNDATION EDUCATES ABOUT SEIZURE RECOGNITION AND FIRST AID, EMPHASIZING THE IMPORTANCE OF EARLY AND ACCURATE DIAGNOSIS, WHEN TO SEEK SPECIALTY CARE, AND PURSUIT OF WELLNESS AND BEST QUALITY OF LIFE. THE FOUNDATION EDUCATES THROUGH ENGAGEMENT WITHMEDIA SOURCES, PARTNERSHIPS WITH OTHER NON-PROFIT, PROFESSIONAL AND GOVERNMENT ORGANIZATIONS. THE FOUNDATION'S EPILEPSY LEARNING HEALTHCARE SYSTEM NETWORK IS A PUBLIC HEALTH INITIATIVE TO DRIVE QUALITY IMPROVEMENT AND HEALTH SERVICES RESEARCH TO IMPROVE OUTCOMES FOR PEOPLE WITH EPILEPSY. 3135685 775961 RESEARCH, INNOVATION, AND NEW THERAPIES - BRINGING INNOVATIVE NEW THERAPIES IN A TIMEFRAME THAT MATTERS IS A DRIVING FORCE AND KEY STRATEGIC PRIORITY FOR THE FOUNDATION. THROUGH THE EPILEPSY THERAPY PROJECT, THE FOUNDATION ACCELERATES DEVELOPMENT OF INNOVATIVE THERAPIES, PREVENTION, AND CURES FOR ALL FORMS OF THE EPILEPSIES, AND ADDRESSES GAPS IN THE RESEARCH AND COMMERCIALIZATION CONTINUUM. OTHER KEY INITIATIVES INCLUDE RESEARCH TO ERADICATE SUDEP, ANALYSIS OF DATA FROM PATIENT REGISTRIES FOR COMMON AND RARE FORMS OF EPILEPSY IN THE HUMAN EPILEPSY PROJECT AND THE RARE EPILEPSY NETWORK, SUPPORT FOR PROMISING AND MERITORIOUS RESEARCH GRANT AND FELLOWSHIP APPLICATIONS. 15345685 1 1 0 1 0 0 0 0 0 1 1 0 0 1 1 1 0 0 0 0 0 0 0 1 1 0 0 1 1 1 0 0 0 0 0 0 0 0 1 0 0 0 1 1 0 0 0 1 85 0 1 140 1 0 0 0 0 0 0 0 0 0 0 X 21 21 0 0 0 0 0 0 0 1 1 0 1 1 1 1 1 1 1 1 1 1 0 AR AL CA FL GA HI IL KS KY MD MA MI MN MS NH NJ NM NY NC OR PA RI SC TN UT VA WV WI X X RAHEL ROSNER 3019183702 3540 CRAIN HIGHWAY NO 675 BOWIE MD 20716 LAURA THRALL CEO 35.00 0.10 X 238531 0 34662 GEOFFREY DELIZZIO CHIEF DEVELOPMENT OFFICER 35.00 0.10 X 195021 0 53193 BRANDY E FUREMAN CHIEF OUTCOMES OFFICER 35.00 0.10 X 193320 0 65646 ELLEN K HOBBY CHIEF OPERATING OFFICER/VP (TO JUL '20) 35.00 0.10 X 172402 0 29803 SUSAN PIETSCH-ESCHUTA VP MARKETING (TO DEC '20) 35.00 0.10 X 169230 0 36194 LAURA WEIDNER VP GOVERNMENT RELATIONS & ADVOCACY 35.00 0.10 X 166281 0 29014 NATHAN DEVAULT VP MARKETING & COMMUNICATIONS 35.00 0.10 X 137596 0 27617 DIANE E RUBINSTEIN CHIEF FINANCIAL OFFICER 35.00 0.10 X 134714 0 61469 GAIL PUNDSACK VP FIELD OPERATIONS 35.00 0.10 X 134061 0 25692 DANIELLE SOLOMON VP HUMAN RESOURCES 35.00 0.10 X 127129 0 24670 GEOFFREY HOYT SNR DIRECTOR OF MAJOR GIFT 35.00 0.10 X 121688 0 48286 JONATHAN E SCHEINMAN DIRECTOR DATA ANALYTICS & PERSONALIZATION 35.00 0.10 X 117039 0 47789 RAHEL ROSNER CHIEF FINANCE AND OPERATING OFFICER 35.00 0.10 X 103430 0 24139 BRADLEY BOYER CHAIR 1.00 0.10 X X 0 0 0 BROOKE GORDON VICE CHAIR 1.00 0.10 X X 0 0 0 ROBERT W SMITH TREASURER 1.00 0.10 X X 0 0 0 CYNTHIA HUDSON SECRETARY (FROM OCT '20) 1.00 0.10 X X 0 0 0 GEOFFREY POPE SECRETARY (TO AUG '20) 1.00 0.10 X X 0 0 0 BRYAN ANDERSON DIRECTOR 1.00 0.10 X 0 0 0 STEVEN BAUM DIRECTOR 1.00 0.10 X 0 0 0 JERILEE BEAUDOIN DIRECTOR (FROM OCT'20) 1.00 0.10 X 0 0 0 MARK BORMAN DIRECTOR 1.00 0.10 X 0 0 0 CAMILA COELHO DIRECTOR 1.00 0.10 X 0 0 0 TONY COELHO DIRECTOR 1.00 0.10 X 0 0 0 FRANK FISCHER DIRECTOR 1.00 0.10 X 0 0 0 STEPHANIE FOKAS DIRECTOR 1.00 0.10 X 0 0 0 RICK HARRISON DIRECTOR (TO OCT '20) 1.00 0.10 X 0 0 0 DAVID HAWK DIRECTOR 1.00 0.10 X 0 0 0 ROGER HELDMAN DIRECTOR 1.00 0.10 X 0 0 0 ADAM KALLER DIRECTOR 1.00 0.10 X 0 0 0 STEVE KUEHN DIRECTOR 1.00 0.10 X 0 0 0 MAY J LIANG DIRECTOR 1.00 0.10 X 0 0 0 DANIEL MOORE DIRECTOR 1.00 0.10 X 0 0 0 JEFFREY PARENT DIRECTOR 1.00 0.10 X 0 0 0 STEVEN SCHACHTER DIRECTOR 1.00 0.10 X 0 0 0 REBEKAH WALKER DIRECTOR 1.00 0.10 X 0 0 0 STEVE WULCHIN DIRECTOR (TO JAN '21) 1.00 0.10 X 0 0 0 2010442 0 508174 21 0 1 0 INNERWORKINGS 203 N LASALLE ST CHICAGO IL 60601 FUNDRAISING SERVICES 925736 CBS TELEVISION STUDIOS 1700 BROADWAY NEW YORK NY 10019 ADVERTISING SERVICES 458006 EPILEPSY STUDY CONSORTIUM 12030 SUNRISE VALLEY DR STE 450 RESTON VA 20191 RESEARCH SERVICES 426506 PROMETHEUS RESEARCH LLC ONE AUDUBON ST STE 400 NEW HAVEN CT 06511 DATABASE MIGRATION SERVICES 242400 RICOH USA INC 300 EAGLEVIEW BLVD EXTON PA 19341 IT SUPPORT SERVICES 195292 12 4019916 3769829 11119402 1048916 18909147 AFFILIATE FEES 900099 386323 386323 233342 233342 619665 292101 292101 7772 7772 1993372 1564229 429143 429143 429143 0 4019916 874281 -874281 -874281 783953 779454 4499 4499 11325 11325 11325 19399371 624164 0 -133940 X 790829 790829 22848 22848 1699858 1339772 203530 156556 5747583 4532359 658688 556536 368010 305405 25281 37324 407863 310030 84838 12995 567748 471188 38992 57568 162733 77915 84818 69534 69534 212750 212750 4122296 3915103 16578 190615 8257 7907 350 886917 821165 19288 46464 759514 456007 79759 223748 1689589 1338419 142828 208342 9869 8323 66 1480 63124 60838 1226 1060 159190 18003 108289 32898 465943 465943 408000 314794 37836 55370 166419 125850 21359 19210 DUES & SUBSCRIPTIONS 45112 35077 5628 4407 26898 5825 20814 259 18860884 15345685 1612449 1902750 X 852529 605296 0 247233 10555306 1823463 1891061 343451 1520492 1347374 28159 28159 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1.00000 0 0 174726 174726 0 6245725 5728260 517465 517465 BENEFICIAL INTEREST IN PERPETUAL TRUSTS 3731234 FLORIDA EPILEPSY SERVICES PRINCIPLE RESERVE 390534 DUE FROM AFFILIATES 73776 BENEFICIAL INTEREST IN ASSETS HELD BY A COMMUNITY FOUNDATION 32235 DEPOSITS 1000 DEFERRED RENT 59 4228838 PPP LOAN 2001450 2001450 X PART V, LINE 4: THE ENDOWMENT FUNDS INCLUDE BOTH ENDOWMENT FUNDS AND PERPETUAL FUNDS HELD BY OUTSIDE INVESTMENT COMPANIES INCOME IS EITHER FOR THE UNRESTRICTED USE OF THE FOUNDATION OR RESEARCH. PART X, LINE 2: FOR THE YEARS ENDED JUNE 30, 2021 AND 2020, THE EPILEPSY FOUNDATION AND THE EPILEPSY RESEARCH FOUNDATION HAVE DOCUMENTED THEIR CONSIDERATION OF FASB ASC 740-10, INCOME TAXES, THAT PROVIDES GUIDANCE FOR REPORTING UNCERTAINTY IN INCOME TAXES AND HAS DETERMINED THAT NO MATERIAL UNCERTAIN TAX POSITIONS QUALIFY FOR EITHER RECOGNITION OR DISCLOSURE IN THE FINANCIAL STATEMENTS. X X X X X X 1 INNERWORKINGS 203 N LASALLE ST CHICAGO IL 60601 FUNDRAISING CONSULTANT 0 1302672 212750 1089922 1302672 212750 1089922 AL AK AR CA CO CT DC FL GA HI IL KS KY LA MD MA ME MI MN MS NH NJ NM NY NC ND OH OK OR PA RI SC TN NV UT VA WA WV WI WALK 1682984 1682984 850 626 459287 CARE & CURE GALAS 1206491 1206491 3172 1133 204243 8 1130441 1130441 318 2295 202357 4019916 4019916 4340 4054 865887 874281 -874281 1 MAYO CLINIC 200 FIRST STREET SW ROCHESTER NY 55905 416011702 501(C)(3) 474987 SEIZURE GAUGE GRANT SOTERYA INC 2010 BROADWAY 201 CAMBRIDGE MA 02139 844362139 OTHER 125000 2020 SHARK TANK WINNER TALIA NEWMAN WEARABLES LLC 7126 LINCOLN DRIVE PHILADELPHIA PA 19119 853178115 OTHER 75000 2020 SHARK TANK WINNER AMERICAN BRAIN FOUNDATION 201 CHICAGO AVENUE MINNEAPOLIS MN 55415 411717098 501(C)(3) 50000 SUSAN B. SPENCER GRANT AMERICAN EPILEPSY SOCIETY 135 S LASALLE STREET SUITE 2850 CHICAGO IL 60603 046112600 501(C)(3) 50000 RESEARCH GRANT 3 2 ROSENZWOG SCHOLARSHIP FUND 8 17000 OTHER ASSISTANCE 5 5848 PART I, LINE 2: THE ORGANIZATION GENERALLY REQUIRES DOCUMENTATION OF EXPENDITURES AND ACHIEVEMENT OF GOALS OF GRANT. X X 0 0 0 0 0 0 0 0 0 LAURA THRALL CEO 238531 0 0 0 0 0 25777 0 8885 0 273193 0 0 0 GEOFFREY DELIZZIO CHIEF DEVELOPMENT OFFICER 195021 0 0 0 0 0 20823 0 32370 0 248214 0 0 0 BRANDY E FUREMAN CHIEF OUTCOMES OFFICER 193320 0 0 0 0 0 33276 0 32370 0 258966 0 0 0 ELLEN K HOBBY CHIEF OPERATING OFFICER/VP (TO JUL ' 172402 0 0 0 0 0 23645 0 6158 0 202205 0 0 0 SUSAN PIETSCH-ESCHUTA VP MARKETING (TO DEC '20) 169230 0 0 0 0 0 25445 0 10749 0 205424 0 0 0 LAURA WEIDNER VP GOVERNMENT RELATIONS & ADVOCACY 166281 0 0 0 0 0 28000 0 1014 0 195295 0 0 0 NATHAN DEVAULT VP MARKETING & COMMUNICATIONS 137596 0 0 0 0 0 2525 0 25092 0 165213 0 0 0 DIANE E RUBINSTEIN CHIEF FINANCIAL OFFICER 134714 0 0 0 0 0 30309 0 31160 0 196183 0 0 0 GAIL PUNDSACK VP FIELD OPERATIONS 134061 0 0 0 0 0 15242 0 10450 0 159753 0 0 0 DANIELLE SOLOMON VP HUMAN RESOURCES 127129 0 0 0 0 0 12070 0 12600 0 151799 0 0 0 GEOFFREY HOYT SNR DIRECTOR OF MAJOR GIFT 121688 0 0 0 0 0 16903 0 31383 0 169974 0 0 0 JONATHAN E SCHEINMAN DIRECTOR DATA ANALYTICS & PERSONALIZ 117039 0 0 0 0 0 16629 0 31160 0 164828 0 0 0 X 779454 FMV X 70 74142 FMV X 16 195320 FMV 0 1 1 PART I, COLUMN (B): THE AMOUNTS IN COLUMN (B) REPRESENT THE NUMBER OF CONTRIBUTIONS THE ORGANIZATION RECEIVED DURING THE YEAR. PART I, LINE 32B: A SEPARATE COMPANY COLLECTS AND SELLS CARS THAT ARE DONATED TO THE ORGANIZATION. THIS ORGANIZATION THEN REMITS THE FUNDS RECEIVED FROM THE SALE OF THESE VEHICLES TO EFA. DONATED CLOTHING AND HOUSEHOLD ITEMS ARE PROCESSED THROUGH A THIRD PARTY WHICH REMITS THE FUNDS TO THE ORGANIZATION. FORM 990, PART VI, SECTION B, LINE 11B THE FORM 990 WAS PREPARED BY THE OUTSIDE ACCOUNTANTS AND AN ELECTRONIC COPY OF THE DRAFT FORM 990 WAS SENT TO ALL BOARD MEMBERS BEFORE FILING. FORM 990, PART VI, SECTION B, LINE 12C THE EPILEPSY FOUNDATION HAS A CONFLICT OF INTEREST POLICY AS PART OF ITS CODE OF ETHICS THAT IS SHARED WITH ALL VOLUNTEERS, BOARD, EMPLOYEES AND AFFILIATES. BOARD MEMBERS AND STAFF ANNUALLY COMPLETE A WRITTEN CONFLICT OF INTEREST DISCLOSURE STATEMENT, WHICH IS KEPT ON FILE AT FOUNDATION HEADQUARTERS. FOUNDATION POLICY REQUIRES ANYONE WITH A CONFLICT OF INTEREST TO REVEAL THE CONFLICT DURING ANY DISCUSSIONS, DECISIONS, OR ACTIONS THAT TAKE PLACE IN WHICH A CONFLICT MAY ARISE, AND TO RECUSE HIM OR HERSELF FROM THE DECISION MAKING OR ACTION TAKEN. THE EXECUTIVE COMMITTEE MAINTAINS AND REVIEWS THE CONFLICT OF INTEREST DISCLOSURE STATEMENTS FROM BOARD MEMBERS. FORM 990, PART VI, SECTION B, LINE 15 THE EPILEPSY FOUNDATION'S COMPENSATION COMMITTEE SETS COMPENSATION FOR THE PRESIDENT & CEO OF THE FOUNDATION AND REVIEWS AND APPROVES ALL COMPENSATION FOR C-SUITE EXECUTIVES (KEY EMPLOYEES). THE CEO IS HIRED AND COMPENSATION TERMS ARE SET BY CONTRACT WHICH HAS BEEN DEVELOPED BY THE COMPENSATION COMMITTEE OF THE BOARD AND APPROVED BY THE BOARD OF DIRECTORS. THE COMPENSATION COMMITTEE IS MADE UP OF EPILEPSY FOUNDATION OFFICERS AND BOARD MEMBERS, ALL WHO ARE VOLUNTEERS, AND INCLUDES THE CEO AS A NONVOTING MEMBER. DURING THE PROCESS FOR CONTRACT DETERMINATION, THE CEO IS RECUSED FROM ALL MEETINGS OF THE COMPENSATION COMMITTEE THAT CONCERN HIS/HER CONTRACT TERMS. THE CHAIR OF THE FOUNDATION NEGOTIATES THE TERMS OF THE CONTRACT WITH THE CEO UNDER THE DIRECTION AND WITH APPROVAL OF TERMS ESTABLISHED BY THE COMPENSATION COMMITTEE OF THE BOARD. IN ORDER TO DETERMINE AN APPROPRIATE SALARY AND COMPENSATION, THE COMPENSATION COMMITTEE REVIEWS COMPARABLE DATA FROM THE WASHINGTON, DC METRO AREA FOR THE CEO POSITION, AS WELL AS DATA FROM THE NATIONAL HEALTH COUNCIL ON COMPENSATION OF CEOS FOR COMPARABLY SIZED AND SIMILARLY SITUATED NONPROFIT ENTITIES. SOURCES REVIEWED AT LAST CONTRACT NEGOTIATION FOR THE CEO INCLUDED THE NATIONAL HEALTH COUNCIL SURVEY DATA, THE AMERICAN SOCIETY OF ASSOCIATION EXECUTIVES SURVEY FOR THE WASHINGTON, DC METRO AREA, DATA FROM THE AMERICAN RESEARCH COMPANY'S GENERAL SURVEY, AND HEALTH AND DISEASE SEGMENT FOR ALL GEOGRAPHY, FOR THE DC METRO AREA. BASED UPON THIS DATA, A SALARY RANGE IS DETERMINED FOR THE CEO POSITION. MINUTES OF THE COMPENSATION COMMITTEE DELIBERATIONS AND ACTIONS CONCERNING COMPENSATION ARE KEPT AT THE FOUNDATION'S HEADQUARTERS OFFICE. IN ADDITION, THE SIGNED CONTRACT SETTING SALARY AND COMPENSATION AND ALL TERMS OF EMPLOYMENT FOR THE CEO ARE MAINTAINED IN THE FOUNDATION'S HEADQUARTERS. RECORDS DOCUMENTATION OF THE DATA SOURCES, THE COMPARATIVE EVALUATIONS MADE, AND THE RESULTS OF THE COMPENSATION COMMITTEE DELIBERATIONS, AND MINUTES OF MEETINGS DURING EXECUTIVE SESSION ARE ALSO INCLUDED IN THESE FILES. ANNUAL REVIEW OF CEO PERFORMANCE IS DONE BY THE COMPENSATION COMMITTEE IN EXECUTIVE SESSION (WITHOUT THE CEO BEING PRESENT), WITH A FORMAL WRITTEN REVIEW REQUIRED. THIS PERFORMANCE REVIEW SERVES AS THE BASIS FOR AN ANNUAL BONUS FOR THE CEO, IF ANY, WITHIN THE TERMS OF THE CEO CONTRACT. THE LAST COMPENSATION REVIEW TOOK PLACE IN JULY, 2021 FOLLOWING THE CLOSE OF FY '21 ON JUNE 20, 2021. THE CEO IS RESPONSIBLE FOR HIRING AND COMPENSATION OF ALL EMPLOYEES OF THE FOUNDATION, INCLUDING KEY EMPLOYEES (C-SUITE EXECUTIVES), WHO TAKE PART IN ANNUAL PERFORMANCE REVIEWS. FORM 990, PART VI, SECTION C, LINE 19 THE EPILEPSY FOUNDATION MAKES ITS GOVERNING DOCUMENTS, CONFLICT OF INTEREST POLICY, AND FINANCIAL STATEMENTS AVAILABLE TO THE PUBLIC UPON REQUEST. FORM 990, PART IX, LINE 11G CONSULTANTS: PROGRAM SERVICE EXPENSES 2,152,586. MANAGEMENT AND GENERAL EXPENSES 15,589. FUNDRAISING EXPENSES 154,767. TOTAL EXPENSES 2,322,942. OTHER PROFESSIONAL FEES: PROGRAM SERVICE EXPENSES 1,762,517. MANAGEMENT AND GENERAL EXPENSES 989. FUNDRAISING EXPENSES 35,848. TOTAL EXPENSES 1,799,354. FORM 990, PART XI, LINE 9: DISTRIBUTION OF EFGLA ASSETS -4,704,556. SPECIAL EVENTS -44,137. BAD DEBT EXPENSE -3,241. 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