2020-11-13T14:52:24-06:00 2019-12-31 362658780 MUELLER & CO LLP 1707 N RANDALL RD STE 200 ELGIN IL 60123 990 2019-01-01 135672224 MYASTHENIA GRAVIS FOUNDATION OF AMERICA INC MYAS 8005415454 290 TURNPIKE RD NO 5-315 WESTBOROUGH MA 01581 WILLIAM SAUERWINE TREASURER 8005415454 2020-10-29 1 BETH ULBRICH P01439597 8478888600 2020-10-27 74.115.53.5 2020-10-29 06:17:04 CD P DC14C5778D16AA68FBA7C56F6CA0FBC682DAB197 8D9FB055F4BB570AE0EEE57488131A31486402A7 2019 2021-01-29 14:40:06Z X SAMANTHA MASTERSON 290 TURNPIKE RD SUITE 5-315 WESTBOROUGH MA 01581 5147379 0 X WWW.MYASTHENIA.ORG X 1952 NY COMMITTED TO FINDING A CURE FOR MYASTHENIA GRAVIS AND CLOSELY RELATED DISORDERS, IMPROVING TREATMENT OPTIONS, AND PROVIDING INFORMATION AND SUPPORT TO PEOPLE WITH MYASTHENIA GRAVIS THROUGH RESEARCH, EDUCATION, COMMUNITY PROGRAMS AND ADVOCACY. 24 23 2 1700 0 0 2047582 2058119 216224 140777 469599 448358 -147948 -67682 2585457 2579572 55000 422146 0 0 24842 108093 379448 87792 218542 1496567 1647982 1955857 2266013 629600 313559 8146592 9512374 807663 971734 7338929 8540640 X COMMITTED TO FINDING A CURE FOR MYASTHENIA GRAVIS AND CLOSELY RELATED DISORDERS, IMPROVING TREATMENT OPTIONS, AND PROVIDING INFORMATION AND SUPPORT TO PEOPLE WITH MYASTHENIA GRAVIS THROUGH RESEARCH, EDUCATION, COMMUNITY PROGRAMS AND ADVOCACY. 0 0 636901 422146 106360 EVALUATING, FUNDING, AND DISSEMINATING CRITICAL RESEARCH: FUNDING OF HIGH IMPACT MG RESEARCH AT PROMINENT UNIVERSITIES AND MEDICAL INSTITUTIONS, INCLUDING LEVERAGING FUNDS IN COLLABORATION WITH THE AMERICAN BRAIN FOUNDATION TO BRING NEW SCIENTISTS TO MG RESEARCH THROUGH FELLOWSHIPS, AND FUNDING PILOT GRANTS AIMED AT LEADING TO LARGER STUDIES. MGFA MAINTAINS THE ONLY US MG PATIENT REGISTRY, WHICH HAS BEEN GROWN TO INCLUDE NEARLY 3,000 PARTICIPANTS. MGFA SPONSORS AN ANNUAL SCIENTIFIC SESSION IN CONJUNCTION WITH THE MEETING OF THE AANEM, ATTRACTING AS MANY AS 150 ATTENDEES. MGFA PROVIDES INFORMATION TO MEMBERS ABOUT RESEARCH INITIATIVES AND PROGRESS, AND SENDS E-BLASTS TO MORE THAN 20,000 PEOPLE WHEN THERE IS BREAKING NEWS. 273444 AWARENESS AND ADVOCACY: MGFA PROVIDES OVER 20 EDUCATIONAL BROCHURES ON TOPICS IMPORTANT TO PEOPLE LIVING WITH MG, FREE OF CHARGE TO PATIENTS AND THE PUBLIC. IN ADDITION, MGFA PROVIDES MANUALS AND INFORMATION FOR HEALTH CARE PROFESSIONALS. THE MGFA CONDUCTS AN ANNUAL AWARENESS CAMPAIGN, CENTERED ON JUNE AS THE MG AWARENESS MONTH, REACHING OUT TO PEOPLE THROUGH OUR SUPPORT GROUPS, AN AWARENESS TOOLKIT FOR ALL WHO ARE INTERESTED IN RAISING AWARENESS OF MG IN THEIR COMMUNITIES, PRESS RELEASES, POSTERS AND PROMOTION IN SOCIAL MEDIA. THE MG WALK ALSO SERVES AS A VEHICLE TO GROW AWARENESS AND LINK PATIENTS AND FAMILIES IN MORE THAN 35 COMMUNITIES NATIONWIDE. MGFA MAINTAINS AN EXTENSIVE WEBSITE WITH EDUCATIONAL CONTENT AND NEWS AS WELL AS FACEBOOK PAGE TO PROMOTE AWARENESS AND THE ORGANIZATION'S EDUCATIONAL MISSION. ANNUALLY, A PATIENT EDUCATION CONFERENCE IS PRODUCED IN VARIOUS LOCALES AROUND THE U.S. WITH A FULL PROGRAM OF SPEAKERS, WORKSHOPS AND EXHIBITORS OVER 2 DAYS. THE FOCUS ON MG NEWSLETTER COVERS PATIENT STORIES, ORGANIZATIONAL ACTIVITIES, COMMUNITY AND SUPPORT GROUP ACTIVITIES, AND RESEARCH UPDATES AND IS SENT TO 25,000 PLUS PEOPLE TWICE A YEAR. 539815 INFORMATION, EDUCATION, AND SUPPORT: MGFA PROVIDES MATERIAL, INFORMATION AND REFERRAL, AND EDUCATION AND SUPPORT PROGRAMS TO HELP PEOPLE MANAGE THE CHALLENGES OF LIVING WITH MYASTHENIA GRAVIS. MGFA IS A UNIFIED ORGANIZATION THAT SUPPORTS THE DELIVERY OF PROGRAMS AND SERVICE THROUGH CENTRAL MANAGEMENT OF A NETWORK OF APPROXIMATELY 100 COMMUNITY GROUPS NATIONWIDE. MANUALS, TOOLS, ORIENTATION, NETWORKING AND TRAINING SESSIONS FOR GROUP LEADERS ARE FACILITATED BY THE HOME OFFICE. A DATABASE OF MEMBERS IS MAINTAINED, WITH A NEW TOOL IMPLEMENTED TO ALLOW FOR BETTER IDENTIFICATION OF MEMBERS AND THEIR NEEDS. THE FOUNDATION MAINTAINS A WEB RESOURCE JUST FOR COMMUNITY AND SUPPORT GROUP LEADERS. FOUNDATION STAFF RESPOND DAILY TO TELEPHONE AND EMAIL INQUIRIES FOR THOSE SEEKING INFORMATION ABOUT MG AND CONNECTION TO COMMUNITY RESOURCES. EDUCATIONAL WEBINARS ARE PROVIDED SEVERAL TIMES A YEAR. MGFA HAS A HIGHLY ENGAGED MEDICAL AND SCIENTIFIC ADVISORY BOARD AND NURSES ADVISORY BOARD, POPULATED BY TOP MG EXPERTS WHO SUPPORT THE ORGANIZATION THROUGH REVIEW OF ALL MATERIALS AND INFORMATION OF A MEDICAL NATURE, AND WHO SERVE AS SPEAKERS AND SPOKESPERSONS FOR MGFA AS NEEDED. 188952 34417 MGFA REACHES OUT TO THE MG COMMUNITY THROUGH SOCIAL MEDIA VEHICLES SUCH AS FACEBOOK AND TWITTER WHEN THERE IS BREAKING NEWS. THE ORGANIZATION HAS ALSO DEVELOPED TOOLS AND STRATEGIES TO HELP WITH HEALTH INSURANCE DENIALS FOR MG TREATMENTS AND THERAPIES, AND THROUGH AN ADVOCACY COMMITTEE, PARTNERSHIP WITH OTHER ORGANIZATIONS AND A GRASSROOTS NETWORK, SUPPORTS LEGISLATION AND ISSUES IMPORTANT TO THE MG COMMUNITY. 188952 34417 1639112 1 1 0 0 0 0 0 0 0 1 1 0 0 0 0 1 1 0 0 0 0 0 0 1 1 0 0 1 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 1 6 0 2 1 0 0 0 0 0 0 0 0 0 0 X 24 23 1 1 0 0 0 0 0 1 1 0 0 1 1 1 1 1 1 1 1 0 AL AR CA CT DC GA IL KS MD MA MI MS MO NH NJ NM NY NC ND OH OR PA RI SC UT VA WA WV WI FL OK AR MN X X MUELLER & CO LLP 8478888600 1707 N RANDALL RD SUITE 200 ELGIN IL 60123 X ALLAN WEISS MD DIRECTOR 4.00 X 0 0 0 CHARLENE HAFER-MACKO MD DIRECTOR 4.00 X 0 0 0 DENISE ROSSI TREASURER 8.00 X X 0 0 0 EDWARD T WALSH CHAIRPERSON 20.00 X X 0 0 0 JEFFREY PILGRIM DIRECTOR 4.00 X 0 0 0 JENNIFER FAUCETT COTE JD DIRECTOR 4.00 X 0 0 0 JURGEN VENITZ MD PHD DIRECTOR 4.00 X 0 0 0 ROBERT L RUFF MD PHD DIRECTOR 4.00 X 0 0 0 SUSAN KLINGER VICE CHAIR 8.00 X X 0 0 0 SUZANNE RUFF PHD SECRETARY 4.00 X 0 0 0 TOMMY SANTORA DIRECTOR 4.00 X 0 0 0 MICHAEL LIFSHITZ DIRECTOR 4.00 X 0 0 0 CELIA MEYER RN DIRECTOR 4.00 X 0 0 0 KATHERINE RUZHANSKY MD DIRECTOR 4.00 X 0 0 0 PHIL COGAN DIRECTOR 4.00 X 0 0 0 DARIN CONSELYEA DIRECTOR 4.00 X 0 0 0 KIM ELDRIDGE DIRECTOR 4.00 X 0 0 0 LINDA KUSNER PHD DIRECTOR 4.00 X 0 0 0 MICHAEL URSIC DIRECTOR 4.00 X 0 0 0 ANNETTE ZAMPELLI DIRECTOR 4.00 X 0 0 0 BRIAN GLADDEN DIRECTOR 4.00 X 0 0 0 JEFFREY GUPTILL DIRECTOR 4.00 X 0 0 0 SUSIE JOHNSON DIRECTOR 4.00 X 0 0 0 PAUL STRUMPH DIRECTOR 4.00 X 0 0 0 NANCY LAW CHIEF EXECUTIVE 40.00 X 0 0 0 BETH ULBRICH CHIEF FINANCIAL OFFICER 8.00 X 0 0 0 0 0 0 0 0 0 0 KELLEN COMPANY 355 LEXINGTON AVE 15TH FLOOR NEW YORK NY 10017 PROGRAM STAFFING 301769 NANCY LAW CONSULTING LLC 46587 INDIAN BRUSH CT PARKER CO 80138 CHIEF EXECUTIVE 157612 MUELLER & CO LLP 1707 N RANDALL RD SUITE 200 ELGIN IL 60123 FINANCIAL MANAGEMENT 146435 EVENT360 55 EAST JACKSON BLVD SUITE 1010 CHICAGO IL 60604 AWARENESS AND FUNDRAISING EVENTS 140000 4 863362 1194757 2058119 RESEARCH STUDIES 900099 106360 106360 CONFERENCE REGISTRATIONS 900099 34417 34417 140777 246775 246775 2505130 2303547 201583 201583 201583 159919 863362 264260 -104341 -104341 90 0 90 90 OTHER INCOME 900099 36569 36569 36569 2579572 177346 0 344107 422146 422146 100412 68412 32000 7681 5233 2448 561662 528370 16646 16646 166202 166202 87792 87792 72223 72223 116461 71412 45049 49810 12749 32210 4851 19533 8612 1240 9681 47088 25555 13615 7918 211687 197995 13692 21678 17427 2264 1987 18618 18618 PRINT, E-BROCHURES AND 192421 128292 11237 52892 CONTRACTED RESEARCH SER 87802 87802 0 0 LOCAL PROGRAMMING 62760 58474 4286 0 REGISTRATIONS & OTHER 20037 6633 11077 2327 2266013 1639112 408359 218542 X 467082 287201 0 179881 1474480 519578 137475 19603 44669 40616 264744 208826 77596 55918 6412372 8876659 8146592 9512374 610403 552421 167500 418313 29760 1000 807663 971734 X 2360048 3012607 4978881 5528033 7338929 8540640 8146592 9512374 313559 888152 0 X 0 1 X 1 0 X 1419717 2671377 1521521 2047581 2058119 9718315 1419717 2671377 1521521 2047581 2058119 9718315 519186 9199129 179423 160262 179463 214653 246775 980576 1692 1514 1513 1657 90 6466 10705357 0.85930 0.84890 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 4185183 943667 219753 4909097 4846974 -443477 218314 4185183 4244669 816522 214217 4846974 4098295 368874 222500 4244669 4612685 -278447 235943 4098295 0.78110 0.21890 0 0 1382 1060 322 263362 207766 55596 55918 X 3579652 888152 111928 1000080 2579572 0 2579572 2377941 111928 111928 2266013 0 2266013 PART V, LINE 4: TO PROVIDE MEDICAL RESEARCH TO FIND A CURE FOR MYASTHENIA GRAVIS. PART X, LINE 2: THE FOUNDATION HAS BEEN DETERMINED TO BE EXEMPT FROM INCOME TAX UNDER SECTION 501(C)(3) OF THE INTERNAL REVENUE CODE AS A PUBLICLY SUPPORTED NOT-FOR-PROFIT VOLUNTARY HEALTH AGENCY, AND ACCORDINGLY, NO PROVISION HAS BEEN MADE FOR EITHER FEDERAL OR STATE INCOME TAXES. IN ADDITION, THE FOUNDATION HAD BEEN DETERMINED BY THE INTERNAL REVENUE SERVICE NOT TO BE A PRIVATE FOUNDATION WITHIN THE MEANING OF SECTION 501(C)(3) OF THE CODE. THE FOUNDATION HAS EVALUATED ITS TAX POSITIONS TAKEN FOR ALL OPEN TAX YEARS. CURRENTLY, THE 2016, 2017, AND 2018 TAX YEARS ARE OPEN AND SUBJECT TO EXAMINATION BY THE INTERNAL REVENUE SERVICE; HOWEVER, THE FOUNDATION IS NOT CURRENTLY UNDER AUDIT NOR HAS THE FOUNDATION BEEN CONTACTED BY ANY OF THESE JURISDICTIONS. BASED ON THE EVALUATION OF THE FOUNDATION'S TAX POSITIONS, MANAGEMENT BELIEVES ALL POSITIONS TAKEN WOULD BE UPHELD UNDER AN EXAMINATION; THEREFORE, NO PROVISION FOR THE EFFECTS OF UNCERTAIN TAX POSITIONS HAS BEEN RECORDED FOR THE YEARS ENDED DECEMBER 31, 2019 AND 2018. PART XI, LINE 2D - OTHER ADJUSTMENTS: DIRECT FUNDRAISING EVENT EXPENSES 184,151. INVESTMENT MANAGEMENT FEES -72,223. PART XII, LINE 2D - OTHER ADJUSTMENTS: DIRECT FUNDRAISING EVENT EXPENSES 184,151. INVESTMENT MANAGEMENT FEES -72,223. PART XII, LINE 4B - OTHER ADJUSTMENTS: ROUNDING X X X X 1 EVENT360 55 EAST JACKSON BLVD STE 1010 CHICAGO IL 60604 AWARENESS AND FUNDRAISING EVENTS 0 863362 44800 818562 BETTY ROSS 6390 POWELL RD PARKER CO 80134 DEVELOPMENT 0 0 42992 -42992 863362 87792 775570 AL AK AZ AR CA CO CT DE FL GA HI ID IL IN IA KS KY LA ME MD MA MI MN MS MO MT NE NV NH NJ NM NY NC ND OH OK OR PA RI SC SD TN TX UT VT VA WA WV WI WY MG WALK 863362 863362 184151 GOLF OUTING 159919 159919 80109 1023281 863362 159919 80109 184151 264260 -104341 SCHEDULE G, PART I, LINE 2B, COLUMN (V) A PROFESSIONAL FUNDRAISER PROVIDED SERVICES FOR THE MG WALK EVENT. 1 UNIVERSITY OF CALIFORNIA DAVIS 1515 NEWTON COURT ROOM 502 DAVIS CA 95616 946036494 501C(3) 27500 80000 FMV GRANT PAYABLE MEDICAL RESEARCH AMERICAN BRAIN FOUNDATION 201 CHICAGO AVENUE MINNEAPOLIS MN 55415 411717098 501C(3) 53333 106667 FMV GRANT PAYABLE MEDICAL RESEARCH LAWSON HEALTH RESEARCH INSTITUE 750 BASELINE ROAD SUITE 300 ONTARIO CA 12230 FMV GRANT PAYABLE MEDICAL RESEARCH NEUROMUSCULAR DIAGNOSTIC CENTER 165 CAMBRIDGET STREET SUITE 820 BOSTON MA 02114 041564655 501(3) 55000 FMV GRANT PAYABLE MEDICAL RESEARCH UNIV OF CAL SAN FRANCISCO 1701 DIVISADERO ST SAN FRANCISCO CA 94115 946036493 501(3) 15116 FMV GRANT PAYABLE MEDICAL RESEARCH DUKE UNIVERSITY 2200 WEST MAIN STREET SUITE 900 DURHAM NC 27705 560532129 501C(3) 55000 FMV GRANT PAYABLE MEDICAL RESEARCH MEDICAL UNIVERSITY OF SOUTH CAROLINA 171 ASHLEY AVENUE CHARLESTON SC 29425 576028985 501C(3) 16800 FMV GRANT PAYABLE MEDICAL RESEARCH PART I, LINE 2: ALL RECEIVED RESEARCH GRANT APPLICATIONS ARE REVIEWED AND RATED INITIALLY BY MG EXPERTS, I.E., THE RESEARCH COMMITTEE FROM THE MEDICAL/SCIENTIFIC ADVISORY BOARD, BASED ON THE SCIENTIFIC MERIT OF THE PROPOSAL AND THE EXPERIENCE/COMPETENCE OF THE INVESTIGATOR(S). A SECONDARY REVIEW IS PERFORMED BY A SUBCOMMITTEE OF THE BOARD OF DIRECTORS (BOD), BASED NOT ONLY ON SCIENTIFIC MERIT, BUT ALSO ON THE NEED OF/IMPACT ON MG PATIENTS, LEADING TO FINAL RECOMMENDATIONS TO THE BOD. THE FULL BOD REVIEWS, DISCUSSES AND VOTES ON ALL RECOMMENDED APPLICATIONS AND SELECTS THE FINAL GRANT RECIPIENTS. ONCE THEY RECEIVE GRANT FUNDING, INVESTIGATORS ARE REQUIRED TO SUBMIT ANNUAL PROGRESS REPORTS FOR REVIEW BY THE BOD FOR SECOND-YEAR FUNDING. FORM 990, PART VI, SECTION A, LINE 2 ROBERT L RUFF AND SUZANNE RUFF HAVE A FAMILY RELATIONSHIP. FORM 990, PART VI, SECTION A, LINE 3 THE DAY TO DAY MANAGEMENT OF THE ORGANIZATION HAS BEEN DELEGATED TO A MANAGEMENT COMPANY. THE DUTIES OF THE MANAGEMENT COMPANY INCLUDE BUT ARE NOT LIMITED TO PLANNING AND EXECUTING FINANCIAL OPERATIONS AND SUPERVISING THE EXEMPT OPERATIONS. ALL OF THE MANAGEMENT COMPANY DUTIES ARE REVIEWED AND MONITORED BY THE BOARD. THE MANAGEMENT COMPANY IS KELLEN COMPANY IN NEW YORK, NY. FORM 990, PART VI, SECTION B, LINE 11B A DRAFT OF THE FORM 990 IS FIRST REVIEWED BY THE CHIEF EXECUTIVE, TREASURER AND FINANCE COMMITTEE AND THEN TO THE AUDIT COMMITTEE FOR REVIEW AND COMMENT. THE FORM 990 IS THEN MADE AVAILABLE TO EACH MEMBER OF THE BOARD OF DIRECTORS PRIOR TO SUBMISSION TO INTERNAL REVENUE SERVICE. FORM 990, PART VI, SECTION B, LINE 12C BOARD MEMBERS PREPARE AN ANNUAL DISCLOSURE STATEMENT. ANY CONFLICTS OF INTEREST THAT ARE REPORTED ARE BROUGHT TO THE ATTENTION OF THE AUDIT COMMITTEE WHICH REPORTS ALL SIGNIFICANT ISSUES TO THE BOARD CHAIR AND CHIEF EXECUTIVE. NECESSARY ACTIONS ARE TAKEN TO MITIGATE ANY CONFLICT OF INTEREST SITUATIONS. FORM 990, PART VI, SECTION B, LINE 15 CONTRACTS FOR TOP MANAGEMENT CONSULTANTS ARE REVIEWED AND APPROVED BY THE EXECUTIVE COMMITTEE USING COMPARABILITY DATA. FORM 990, PART VI, SECTION C, LINE 19 A REQUEST FOR PUBLIC DOCUMENT MAY BE RECEIVED IN PERSON, BY PHONE, BY MAIL OR BY EMAIL. THE REQUEST WOULD BE RECEIVED BY THE MANAGEMENT COMPANY WHICH WOULD FORWARD THE REQUEST TO THE CHIEF EXECUTIVE WHO WOULD RESPOND TO THE REQUEST WITHIN TWO WEEKS. FORM 990 IS AVAILABLE TO THE PUBLIC VIA THE ORGANIZATION'S WEBSITE.