2025-11-08T13:56:40-08:00 2024-12-31 274516447 Quist & Associates LLC PO Box 372 Occoquan VA 22125 990 2024-01-01 541660976 The Myositis Association MYOS 8008217356 6950 Columbia Gateway Dr 370 Columbia MD 21046 Paula Eichenbrenner Executive Director 2025-10-23 true true Elizabeth Quist P01269026 7035971370 X 2024 2025-03-06 01:10:19Z Laurie Boyer 2380615 false X www.Myositis.org X 1993 VA 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 treatments, an 17 17 4 92 1000 1189812 1576936 84124 434403 -10414 32159 -13623 -31399 1249899 2012099 228536 331216 0 518793 451199 0 167309 1141148 1011999 1888477 1794414 -638578 217685 1779524 2013453 489420 469479 1290104 1543974 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 treatments, an false false 527150 15084 433403 Global Myositis 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 2024 IAPC took place in Baltimore, Maryland, US, from Sept. 4-7. The conference included our first off-site medical and sightseeing excursions; TMA's Heroes in the Fight Awards; and a virtual recordings package to extend the reach of our conference breakout sessions. Many of TMA's members cannot 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. 407313 316132 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. Twelve TMA grants were active in 2024. We continued our 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, and funded innovative pilot projects. From 2002 to 2024, TMA has awarded 68 research grants totaling nearly $8 million. Two new projects were approved in 2024: "Senolytic therapies in a novel patient-derived myoblast model of inclusion body myositis and Mitochondrial contribution to juvenile dermatomyositis." The grants portfolio is designed to advance our collective understanding of inclusion body myositis, dermatomyositis, necrotizing myopathy, polymyositis, and all forms of 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. 186301 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 2024, we organized Myositis Awareness Month from May 1-31, 2024 and we participated in World Myositis Day on September 21, 2024. 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. In 2024, we hosted a myositis research symposium for physicians and experts during our Global Myositis Patient Conference; we co-hosted an Externally-Led Patient-Focused Drug Development meeting with regulatory decision-makers and MSU; and we co-hosted a summit featuring "Recent Advances in Myositis Research and Treatment" with the Cure Juvenile Myositis (JM) Foundation. 137790 Patient Support and Education: TMA's Support Groups offer members the chance to share their feelings and discuss their concerns with people in similar situations. These groups, which are offered in-person and virtually, encourage an atmosphere of communication and compassion. TMA also administers Affinity Groups with outreach targeted toward supporting and extending our organization's reach into new communities. Through Affinity Groups, TMA brings together of people who have commonality such as Military Veterans, Women with IBM, Women of Color, Care Partners, and more. TMA's 36 regional Support Groups and 8 virtual Affinity Groups welcomed nearly 4,000 patients and care partners to group meetings in 2024. TMA's educational efforts, especially those organized during Myositis Awareness Month and World Myositis Day, create broader community awareness, direct our members to TMA offerings and resources, educate around patient and disease advocacy, share clinical insights, and build a stronger and more connected myositis community. TMA resources share information on diagnosis, treatments, research news, and other relevant topics that help patients and care partners learn what they need to address their individual health care concerns. TMA additionally hosts webinars year-round, including our monthly Ask the Expert series as well as Research Insights, Empowerment Clinic, and Awareness Clinic offerings. 1,399 registrants participated in TMA's virtual programs in 2024. 137790 1258554 true true false false false false false false false false true false false true true true false false false false true true true false false false false true true true false false false false false false false false false false false false false false false false false true 11 0 true 4 true true true false false false false false false 0 false false false false false false false X 17 17 false false true 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 Paula Eichenbrenner Executive Dir. 40.00 0.00 X 180562 0 0 Laurie Boyer Chair Director 3.00 0.00 X X 0 0 0 Rich DeAugustinis Vice Chair Director 1.50 0.00 X X 0 0 0 Martha Arnold Secretary Director 1.50 0.00 X X 0 0 0 Howard Gerrin Treasurer Director 1.50 0.00 X X 0 0 0 Jeff Autrey Director 0.50 0.00 X 0 0 0 Iazsmin Bauer Ventura Director 0.50 0.00 X 0 0 0 Richard Chip Galloway 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 Ricky Marks Director 0.50 0.00 X 0 0 0 David Mochel Director 1.50 0.00 X 0 0 0 Tahseen Mozaffar Director 0.50 0.00 X 0 0 0 Jane Myles Director 0.50 0.00 X 0 0 0 Rodger Oren Director 0.50 0.00 X 0 0 0 Meriel Parker Director 0.50 0.00 X 0 0 0 Mustafa Shameem Director 0.50 0.00 X 0 0 0 Nita Sharma Director 0.50 0.00 X 0 0 0 180562 1 false true false 0 1940 1574996 1576936 Outlook Advertising 513120 1000 1000 Patient Conferences 624100 433403 433403 434403 30656 30656 0 0 0 328668 327165 1503 1503 1503 0 0 10406 41351 -30945 -30945 Loss on asset disposal -454 -454 -454 2012099 434906 1000 -743 X 81268 81268 14246 14246 235702 235702 0 192132 83336 68127 40669 0 200115 182217 8348 9550 4987 3377 972 638 25462 17239 4963 3260 28503 19322 5535 3646 0 15804 15804 87793 87793 0 0 10492 10492 319022 142606 107865 68551 2746 2746 100576 57016 36742 6818 0 0 89036 62643 14653 11740 34893 33337 716 840 0 288121 285032 159 2930 0 0 7081 4794 1380 907 6240 3274 2382 584 Printing and Publications 22115 18275 326 3514 Licenses & Fees 11249 53 700 10496 Postage and Shipping 9974 7836 293 1845 Dues & Subscriptions 6857 4235 1301 1321 0 1794414 1258554 368551 167309 53430 304342 11088 156813 46737 43000 18732 0 0 0 0 34101 18237 114699 71187 23211 43512 1237590 1116945 0 0 0 377104 308135 1779524 2013453 98484 150733 390936 318746 489420 469479 X 1100057 1151091 190047 392883 1290104 1543974 1779524 2013453 217685 36185 X false true X true false X 1046547 1310729 1435059 1193313 1576936 6562584 0 0 1046547 1310729 1435059 1193313 1576936 6562584 351822 6210762 34442 1820719 802194 630095 358870 3646320 0 0 10208904 732910 0.60840 0.58410 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 13997 2627 11370 4493 2379 2114 96209 66181 30028 43512 Right of Use Asset 287007 Security Deposits 21128 308135 Lease Liability 318746 318746 X 2082793 36185 3650 41351 81186 2001607 10492 10492 2012099 1828923 3650 41351 45001 1783922 10492 10492 1794414 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. Part XI, Line 2d: Other revenue amounts included in F/S but not included on form 990 COGS $41351 Part XII, Line 2d: Other expenses and losses per audited F/S COGS $41351 true Europe 0 0 Research Grant Grant Making 234864 234864 234864 EastAsiaPacific Research Grant 99864 Wire Europe Research Grant 135000 Wire 4 Conference Attendance North America 1 838 Conference Fee FMV 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 Grants 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 committee of satisfactory interim and annual progress reports. true Johns Hopkins University 855 N Wolfe St Baltimore MD 21205 520595110 25000 0 FMV Research Grant National Institutes of Health 31 Center Dr Bethesda MD 20892 521986675 50000 0 FMV Research Grant University of Pennsylvania 3451 Walnut St Philadelphia PA 19104 231352685 6268 0 FMV Research Grant 3 0 Conference Attendance 17 14246 FMV 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 Grants 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 X false false false false false false false false false Paula Eichenbrenner Executive Dir. 180562 180562 Form 990, Part VI, Section A, Line 4 In 2024, TMA's Governance Committee and Board of Directors undertook a comprehensive review of TMA's bylaws, in partnership with legal counsel. This was the first bylaws review since 2013. Amended bylaws were adopted by the Board in December 2024. The new bylaws clarify and modernize TMA's governance and operations by: establishing a maximum number of directors; extending director terms to 3 years; requiring a 2/3 majority to amend the bylaws; making the Executive Director an ex-officio (non-voting) Board member; and clarifying the important role of advisory councils. 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 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 led by the Board Chair and 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, and the decision is conveyed to the Executive Director in a letter. 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.