2024-05-09T07:09:54-05:00 2023-12-31 363321958 DESMOND & AHERN LTD 10827 S WESTERN AVENUE CHICAGO IL 606433206 990 2023-01-01 135672224 Myasthenia Gravis Foundation of America Inc MYAS 8005415454 290 Turnpike Rd 5-315 Westborough MA 01581 Justin Stachtiaris Treasurer 8005415454 2024-05-08 1 Justin Stachtiaris 999009999 1 Mel Padillo P03172019 7737794720 2024-05-08 2 AAL1 IAL1 2023 2023-04-26 12:10:37Z Justin Stachtiaris 290 Turnpike Rd 5-315 Westborough MA 01581 11161733 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. 11 11 11 2500 0 0 3608887 3033495 452123 112906 275279 389120 52240 19804 4388529 3555325 789999 370000 0 0 1352708 1685309 0 0 574684 1648028 1524794 3790735 3580103 597794 -24778 11363951 12011651 1331128 1400541 10032823 10611110 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 1031841 370000 67918 Evaluating, Funding, and Disseminating Critical Research: Funding of high impact MG research at prominent universities and medical institutions, including leveraging funds in collaboration with strategic partners, such as the American Brain Foundation and MGNet, to bring new scientists to MG research through fellowships, funding pilot grants and special projects. MGFA maintains the only global MG patient registry, which has grown to include nearly 3,500 participants. MGFA sponsors an annual scientific session in conjunction with AANEM, attracting over 250 attendees. MGFA sponsors an International Conference every 3 years which attracts leading MG researchers from all over the world, attracting over 350 attendees. MGFA provides information to 40,000 plus constituents about research initiatives and progress when appropriate. 377411 8554 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 a professional manual, and other important educational information, for health care professionals. The MGFA conducts an annual awareness campaign, June MG Awareness Month, reaching out 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. 1002267 56238 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 national organization that supports the delivery of programs and services through a myriad of channels including a network of approximately 85 support groups, Partners in MG Care and a number of other networks nationwide. The MGFA website is one of the organization's greatest resources and is a premier source of information. MGFA also hosts a number of live and interactive educational forums, including 18 wellness and research webinars as well as hosted eight Community Health Fairs in various US cities for MG patients and caregivers to interact, obtain information and learn about MG research and treatment developments from MG experts and corporate industry leaders. MGFA annually hosts a National Patient Conference, a gathering of the MG Community which features MG research updates, patient stories, news about MG treatments and discoveries and many exciting educational topics to help patients and caregivers manage their MG journey. MGFA has also developed an Online Community platform which is a one-of-a-kind virtual neighborhood where the MG Community can connect, share ideas and discoveries and access MG-specific educational materials such as live broadcasts, webinars and information libraries in one place. MGFA also maintains an extensive website which provides patients and caregivers with educational content and news as well as Facebook page to promote awareness and the Organization's educational mission. 2411519 1 1 0 0 0 0 0 0 0 1 1 0 0 0 1 1 1 0 0 0 0 0 0 0 1 0 0 1 0 1 0 0 0 0 0 1 0 0 0 0 0 0 0 0 0 0 0 1 10 0 1 11 1 0 0 0 0 0 0 0 0 0 0 0 0 X 11 11 0 0 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 Daryl Lee 8005415454 290 Turnpike Rd Suite 5-315 Westborough MA 01581 Brian Gladden Chair 8.00 X X 0 0 0 Robert Thomas Vice Chair 8.00 X X 0 0 0 William Sauerwine Vice Chair (ended 11/2023) 8.00 X X 0 0 0 Adrejia Boutte Secretary 8.00 X X 0 0 0 Justin Stachtiaris Treasurer 8.00 X X 0 0 0 Kelly Gwathmey MD Director 4.00 X 0 0 0 Richard J Nowak MD Director 4.00 X 0 0 0 Kevin O'Connor MD Director 4.00 X 0 0 0 Sangeeta Sawhney MD Director 4.00 X 0 0 0 Callum Schjerning Director 4.00 X 0 0 0 Kyle Sell Director 4.00 X 0 0 0 Paul Strumph MD Director 4.00 X 0 0 0 Jeffrey Pilgrim Director (ended 4/2023) 4.00 X 0 0 0 Esther Land Director (non-voting) 4.00 X 0 0 0 Marcia Lorimer Director (non-voting) 4.00 X 0 0 0 Mark Kalish Director (non-voting) 4.00 X 0 0 0 Susan Klinger Director (non-voting) 4.00 X 0 0 0 Sam Schuloff Director (non-voting) 4.00 X 0 0 0 Samantha Masterson Chief Executive Officer 40.00 X 273575 0 4356 Craig Stenger Vice President, Operations 40.00 X 167312 0 4903 Michael Antonellis Vice President, Global Mar 40.00 X 158122 0 2624 Wendi Huff Vice President, Global Ind 40.00 X 113764 0 168 Caroline Gaylor National Director, Strateg 40.00 X 109198 0 1575 Merideth O'Conner AVP, Patient Engagement 40.00 X 106959 0 3385 Dova Levin National Senior Director, 40.00 X 105074 0 1828 Daryl Lee National Director, Finance 40.00 X 103699 0 1807 1137703 0 20646 8 0 1 0 0 71389 2962106 3033495 Research studies 900099 56668 56668 Conference registrations 900099 56238 56238 112906 384522 384522 7532691 7528093 4598 4598 4598 78315 71389 78315 0 Other income 900099 19804 19804 19804 3555325 132710 0 389120 370000 370000 277931 166838 48452 62641 1252575 751903 218360 282312 12756 7657 2224 2875 29130 17486 5079 6565 112917 67782 19685 25450 3869 84 3662 123 15100 326 14294 480 89153 89153 110248 78408 11874 19966 148910 111477 6632 30801 59774 7446 48848 3480 132959 37482 37372 58105 110227 62291 29701 18235 264960 225947 27230 11783 27840 27840 33792 1863 31334 595 Contracted research ser 309833 309833 Program technology 123160 123160 Cost of events 94969 43696 51273 3580103 2411519 593900 574684 1069936 938058 173000 96500 192976 200329 152115 161419 374036 288366 113510 85670 9662414 10529675 11363951 12011651 331083 318096 784166 755364 155879 60000 327081 1331128 1400541 X 5381564 5661136 4651259 4949974 10032823 10611110 11363951 12011651 -24778 603065 0 X X 0 1 X 1 0 X 2058119 3228993 2800892 3608887 2938526 14635417 2058119 3228993 2800892 3608887 2938526 14635417 2877126 11758291 246775 191596 189501 252442 384522 1264836 90 157922 3946 19804 181762 16082015 872361 0.73110 0.78730 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 4366388 605072 250106 4721354 5538245 -913320 258537 4366388 5163307 611023 236085 5538245 4909097 485026 230816 5163307 4185183 943667 219753 4909097 0.81220 0.18780 0 0 374036 288366 85670 85670 Refundable advances 327081 327081 X 4147553 603065 78315 681380 3466173 89153 89153 3555326 3569265 78315 78315 3490950 89153 89153 3580103 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 2019, 2020 and 2021 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 year ended December 31, 2022. Part XI, Line 2d - Other Adjustments: Direct Fundraising Event Expenses Part XII, Line 2d - Other Adjustments: Direct Fundraising Event Expenses Part V, Line 4: To support medical research to find a cure for myasthenia gravis. Tampa Mini Mile 6973 6973 3573 855 696 1058 Golf Outing 112951 64416 48535 0 15068 20625 30858 5582 119924 71389 48535 18641 21480 30858 696 6640 78315 -29780 1 Mayo Clinic 200 First St SW Rochester MN 55905 Rochester MN 55905 100000 0 The 3' untranslated region variants and therapeutic targets in congenital myasthenic syndrome genes Univeristy of California San Diego 9500 Gilman Drive MC 0009 La Jolla CA 92093 La Jolla CA 92093 110000 0 Purification of the acetylcholine receptor toward atomic-scale mechanisms underlying MG University of California Davis 1850 Research Park Drive Suite 300 Davis CA 95618 Davis CA 95618 110000 0 AAV-mediated gene therapy for congenital myasthenia caused by recessive synaptotagmin 2 mutations. The George Washington University 45155 Research Place Suite 360 Ashbum VA 20147 United States Ashburn VA 20147 50000 0 Dr Kaminski's MG Net Pilot Studies program 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. X 0 0 0 0 0 0 0 0 0 Samantha Masterson Chief Executive Officer 273575 0 0 0 0 0 4104 0 252 0 277931 0 0 0 Craig Stenger Vice President, Operations 167312 0 0 0 0 0 0 0 4903 0 172215 0 0 0 Michael Antonellis Vice President, Global Mar 158122 0 0 0 0 0 2372 0 252 0 160746 0 0 0 Part I, Line 3 Salary of CEO is reviewed and approved by the Executive Committee using comparability data. Key employees salaries are determined by the CEO using comparability data. Robert Thomas 51% owner of NU Energy, the organizations payroll and HR advisor 13048 Payroll processing fees 0 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 Salary of CEO is reviewed and approved by the Executive Committee using comparability data. Key employees salaries are determined by the CEO 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. Form 990, Part XII, line 2c: The process has not changed from the prior year.