2024-11-14T14:06:08-08:00 2023-12-31 274516447 Quist & Associates LLC PO Box 372 Occoquan VA 22125 990 2023-01-01 541660976 The Myositis Association MYOS 8008217356 6950 Columbia Gateway Dr 370 Columbia MD 21046 Paula Eichenbrenner Executive Director 2024-11-14 true true Elizabeth Quist P01269026 7035971370 X 2023 2024-10-15 13:58:12Z Laurie Boyer 1920753 false X www.Myositis.org X 1993 VA In 2023, The Myositis Association (TMA) celebrated our 30th year of service to the worldwide myositis community. TMA Myositis Africa was established as our newest regional support group, with support from the TMA Women of Color Affinity Group. Two new research grants were approved, in myositis-associated interstitial lung disease and predictive modeling of inclusion body myositis. Two investigators with TMA-funded projects concluded their studies in 2023, with findings on immune checkpoint inhibitor-induced myositis and the pathological role of B cells in myositis. TMA continued our long-running International Annual Patient Conference, hosted the "Beyond Limits" virtual summit during Myositis Awareness Month, and partnered with the Kansas University Medical Center on a virtual Regional Conference for Myositis Patients. 17 17 8 75 3500 1435059 1189812 64068 84124 -183061 -10414 1196 -13623 1317262 1249899 332573 228536 0 615075 518793 0 148572 706821 1141148 1654469 1888477 -337207 -638578 2327942 1779524 574535 489420 1753407 1290104 X The mission of The Myositis Association, or TMA, is: to improve the lives of persons affected by myositis, fund innovative research, and increase myositis awareness and advocacy. TMA is the premier international organization providing important resources, education and support to those in the myositis community. This community consists of children, adults, and their families who live with the daunting and life-changing physical, psychological and emotional effects of myositis. Nationwide, an estimated 75,000 Americans are affected by this collection of rare diseases. Symptoms of myositis include, but are not limited to: muscle weakness; pain; fatigue; tripping or falling; trouble swallowing; difficulty breathing; and irritations of the skin, joints, and eyes. Myositis is often difficult to diagnose, because many physicians are unfamiliar with the disease and its symptoms. Also, as a rare disease, it can be difficult to enroll enough patients to conduct adequate research of new treatmen false false 382541 598 80624 International Annual Patient Conference: TMA has convened myositis patients, care partners, and clinicians for a multi-day conference focused on learning and community-building since 1995. TMA's International Annual Patient Conference (IAPC) is now an annual event with panels of medical experts, peer counseling, sessions on coping skills, exercise workshops, and time to meet other patients and their families. The 2023 IAPC took place in San Diego, Calif., US, from Sept. 7-10. The conference included TMA's Heroes In The Fight Awards presentation, and a virtual recordings package to extend the reach of our conference breakout sessions. Many of TMA's members are not able to travel, due to the progressively debilitating nature of their form of myositis. TMA offers the conference recordings at a discounted price to share the learnings from TMA's IAPC as widely and inclusively as possible. 377670 227443 Research Grants: TMA aims to identify the underlying causes and natural progression of myositis, develop better treatments and more effective therapies, and ultimately to arrive at cures for this collection of disabling diseases. Through our research program, we progress toward a world without myositis. Scientists, practicing physicians, and other medical professionals have supported TMA through our active Medical Advisory Board. This group provides medical information to staff and patients, and guides the TMA research program. TMA recognizes that the myositis patient's best hope for a cure lies in research. More than a dozen TMA grants were active in 2023, including a research fellowship program to attract and encourage post-doctoral trainees (PhD and MD) and early-career physicians to pursue careers in the field of myositis research. TMA also funded innovative pilot projects that will support larger funding opportunities. From 2002 to 2023, TMA has awarded 66 research grants totaling nearly $8 million. Funding has been designed to advance our collective understanding of inclusion body myositis, dermatomyositis, polymyositis, necrotizing myopathy, and all forms of myositis. 241712 Other Program Services: TMA's other initiatives are focused on awareness, advocacy, and clinician outreach. We are continually updating approximately 13,000 members through monthly e-newsletters, quarterly magazines, videos on YouTube, social media channels, and the highly trafficked website myositis.org. Our efforts to elevate the understanding of myositis among the general public are very important. Because these diseases are very rare, advocacy on behalf of the families affected by myositis is a core component of our mission. In 2023, we organized Myositis Awareness Month from May 1-31, 2023 and we participated in World Myositis Day on September 21, 2023. TMA also provides resources for healthcare professionals, to ensure that they receive the latest information on treating myositis and communicating effectively with their patients. We publish various resources, including our "Myositis 101" physician booklets, disease overview brochures, and infographics about health equity, nutrition for autoimmune patients, and more. In 2023, we hosted a myositis research symposium for physicians and experts during our International Annual Patient Conference and we co-hosted a scientific annual meeting with the International Myositis Assessment and Clinical Studies Group (IMACS) and the Cure Juvenile Myositis (JM) Foundation. 195311 495 1197234 true true false false false false false false false false true false false true true true false false false false true true false false false false false true false true false false false false false false false false false false false false false false false false false true 18 0 true 8 true true true false false false false false false 0 false false false false false false false X 17 17 false false false false true false false true true false false true true true true true true true false false CA FL IL KS MA MD MI NC NJ NY OH PA VA WA X X The Organization 8008217356 6950 Columbia Gateway Dr Suite 370 Columbia MD 21046 Rhonda Buckley-Bishop Interim Executive Dir. 40.00 0.00 X 183137 0 0 Chris Thornton Outgoing Executive Dir. 40.00 0.00 X 20436 0 0 Paula Eichenbrenner Incoming Executive Dir. 40.00 0.00 X 16231 0 0 Martha Arnold Secretary 1.50 0.00 X X 0 0 0 Laurie Boyer Vice Chair Director 1.50 0.00 X X 0 0 0 Jeff Autrey Director 0.50 0.00 X 0 0 0 Gail Bayliss Director 0.50 0.00 X 0 0 0 Rex Bickers Director 0.50 0.00 X 0 0 0 David Mochel Chair Director 1.50 0.00 X X 0 0 0 Marianne Moyer Director 0.50 0.00 X 0 0 0 Ronne Adkins Director 0.50 0.00 X 0 0 0 Rodger Oren Director 0.50 0.00 X 0 0 0 Iazsmin Bauer Ventura Director 0.50 0.00 X 0 0 0 Holly Jones Director 0.50 0.00 X 0 0 0 Frank Lipiecki Director 0.50 0.00 X 0 0 0 Rich DeAugustinis Treasurer 1.50 0.00 X X 0 0 0 Ricky Marks Director 0.50 0.00 X 0 0 0 Nita Sharma Director 0.50 0.00 X 0 0 0 Howard Gerrin Director 0.50 0.00 X 0 0 0 Tahseen Mozaffar Director 0.50 0.00 X 0 0 0 219804 1 false true false 0 2009 1187803 1189812 Outlook Advertising 3500 3500 Patient Conferences 624100 80624 80624 84124 34494 34494 0 0 0 595051 550 638556 1953 -43505 -1403 -44908 -44908 0 0 16722 30345 -13623 -13623 0 1249899 35716 3500 20871 X 152000 152000 1093 1093 75443 75443 0 235401 26621 203456 5324 0 226272 198608 13661 14003 3248 2775 237 236 31379 26807 2293 2279 22493 20411 530 1552 0 20708 20708 86526 86526 0 0 12670 12670 397101 135624 148677 112800 7979 7952 27 102060 70390 29740 1930 42408 36992 2716 2700 0 87114 74423 6365 6326 26261 24365 1770 126 0 327917 327917 0 0 10121 8646 740 735 3669 3135 268 266 Licenses & Fees 11990 11990 Dues & Subscriptions 4624 4032 297 295 0 1888477 1197234 542671 148572 104705 53430 160751 11088 0 140278 43000 0 0 0 0 32043 34101 108653 85442 31825 23211 1429455 1237590 0 0 0 428885 377104 2327942 1779524 116293 98484 458242 390936 574535 489420 X 1549641 1100057 203766 190047 1753407 1290104 2327942 1779524 -638578 175275 X false true X true false X 804288 1046547 1310729 1435059 1193313 5789936 0 0 804288 1046547 1310729 1435059 1193313 5789936 412493 5377443 129697 34442 1820719 802194 630095 3417147 0 0 9207083 371215 0.58410 0.58120 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 12965 1694 11271 5792 1669 4123 89896 82079 7817 23211 Right of Use Asset 355976 Security Deposits 21128 377104 Lease Liability 390936 390936 X 1445904 175275 3055 30345 208675 1237229 12670 12670 1249899 1878862 3055 3055 1875807 12670 12670 1888477 Part X : FIN48 Footnote TMA is exempt from Federal income taxes under Section 501c3 of the Internal Revenue Code. Accordingly, no provision for income taxes has been made in the accompanying financial statements. TMA is not a private foundation. For the year ended December 31, 2023, TMA has documented its 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. Part XI, Line 2d: Other revenue amounts included in F/S but not included on form 990 COGS $30345 true Europe 0 0 Research Grant Grant Making 75443 75443 75443 Europe Research Grant 75443 Check/Wire 3 false false false false false false Part I, Line 2 - Grantmakers Explanation For Monitoring Use of Funds Outside US The organization has a well documented, thorough program for soliciting and evaluating requests for research and research fellowship grants. The process is overseen by the research committee of the TMA Medical Advisory Board in partnership with the TMA Board of Directors. Their evaluations are presented to the TMA Board of Directors, which determines which requests will be funded. For all grants with multi-year funding, the commitment beyond the initial years is contingent upon receipt and evaluation by the research committee of satisfactory interim and annual progress reports. true Johns Hopkins University 855 N Wolfe St Baltimore MD 21205 520595110 50000 0 FMV Research Grant Research Foundation for SUNY 35 State St Albany NY 12207 141368361 50000 0 FMV Research Grant University of Kansas 2385 Irving Hill Rd Lawrence KS 66045 480680117 50000 0 FMV Research Grant 3 0 Grantmaker's Description of How Grants are Used The organization has a well documented, thorough program for soliciting and evaluating requests for research and research fellowship grants. The process is overseen by the research committee of the TMA Medical Advisory Board in partnership with the TMA Board of Directors. Their evaluations are presented to the TMA Board of Directors, which determines which requests will be funded. For all grants with multi-year funding, the commitment beyond the initial years is contingent upon receipt and evaluation by the research committee of satisfactory interim and annual progress reports. X X X false false false false false false false false false Rhonda Buckley-Bishop Interim Executive Dir. 183137 183137 Form 990, Part III, Line 4d OTHER PROGRAM SERVICES 4: Other Program Services: TMA's other initiatives are focused on awareness, advocacy, and clinician outreach. We are continually updating approximately 13,000 members through monthly e-newsletters, quarterly magazines, videos on YouTube, social media channels, and the highly trafficked website myositis.org. Our efforts to elevate the understanding of myositis among the general public are very important. Because these diseases are very rare, advocacy on behalf of the families affected by myositis is a core component of our mission. In 2023, we organized Myositis Awareness Month from May 1-31, 2023 and we participated in World Myositis Day on September 21, 2023. TMA also provides resources for healthcare professionals, to ensure that they receive the latest information on treating myositis and communicating effectively with their patients. We publish various resources, including our "Myositis 101" physician booklets, disease overview brochures, and infographics about health equity, nutrition for autoimmune patients, and more. In 2023, we hosted a myositis research symposium for physicians and experts during our International Annual Patient Conference and we co-hosted a scientific annual meeting with the International Myositis Assessment and Clinical Studies Group (IMACS) and the Cure Juvenile Myositis (JM) Foundation. Form 990, Part VI, Section A, Line 6 Membership is free. Upon registering with TMA, an individual becomes a member and is entitled to newsletters and various incidental benefits. The membership does not convey a right to vote concerning organizational matters. Form 990, Part VI, Section B, Line 11b The Form 990 is first reviewed by and approved by the Executive and Finance Committees and then circulated to the full Board for comment prior to filing and release. Form 990, Part VI, Section B, Line 12c The conflict-of-interest policy is acknowledged and disclosure forms are signed by each Board member and officer at the beginning of his or her term of service. The policy requires that the member or officer make the organization aware of any conflicts. Subsequently, an annual positive confirmation is required from each member or officer. The review of these annual confirmations is delegated to the Chair of the Board and Executive Director in consultation with legal counsel. If a determination of a disqualifying bias or a conflict of interest is found, necessary action is taken pursuant to the conflict-of-interest policy. Form 990, Part VI, Section B, Line 15a Executive Director compensation is documented in a written employment contract. Compensation is reviewed annually based upon performance objectives established by the Board at the beginning of each year as well as market compensation considerations. This review is conducted by the Executive Committee of the Board, acting as a Compensation Committee. All members of this Committee are independent directors. The Committee's recommendations are then brought to the full Board for consideration. Deliberations are documented in minutes. Form 990, Part VI, Section C, Line 19 The organization's audited annual financial statements are published on its website. Governing documents and conflict of interest policy are available by request. TMA provides Guidestar.org with a digital copy of its Form 990, which is available on that site and others.