2023-11-09T17:45:24-08:00 2022-12-31 274516447 Quist & Associates LLC PO Box 372 Occoquan VA 22125 990 2022-01-01 541660976 The Myositis Association MYOS 8008217356 6950 Columbia Gateway Dr 370 Columbia MD 21046 Rhonda Buckley-Bishop Interim Executive Director 2023-11-09 true Rhonda Buckley-Bisho Interim 999009999 true Elizabeth Quist P01269026 7035971370 X 2 AAL1 IAL1 FAL1 2022 2023-04-26 12:10:37Z David Mochel 6950 Columbia Gateway Dr 370 Columbia MD 21046 2302517 false X www.Myositis.org X 1993 VA In 2022, we expanded the footprint of TMA's virtual outreach to include new educational programming, the creation of additional Affinity Groups, and the second year of a national signature awareness and fundraising campaign. TMA returned to an in-person International Annual Patient Conference, which also had a virtual component for those not comfortable with, or unable to, travel. It was well attended and successful in its mission to bring the myositis patient and medical communities together. 16 16 8 46 0 1265832 1435059 65826 64068 438667 -183061 592 1196 1770917 1317262 283708 332573 0 491934 615075 0 206894 494146 706821 1269788 1654469 501129 -337207 2957547 2327942 632994 574535 2324553 1753407 The Myositis Association 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 rare disease. Symptoms of myositis include but are not limited to muscle weakness and pain fatigue tripping or falling trouble swallowing difficulty breathing 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, and there are often no clear guidelines in the medical community on how to effectively manage patients with myositis. Nevertheless, myositis is a serious and often treatable illn false false 629258 TMA's Support Groups offer members the chance to share their feelings and discuss their concerns with people in similar situations. These groups offered in person and virtually encourage an atmosphere of communication and compassion. TMA supports Affinity Group meeting circles with outreach efforts targeted toward supporting and extending our organization's reach into new communities. The term affinity group is used as a bringing together of people who have commonality. Affinity groups are for individuals who identify as members of the group and can speak to the experience of being a part of the group from an I perspective. These groups also help to address growing health equity and access issues in the rare disease industry. Increased awareness of myositis has the potential to lead to earlier diagnosis and more effective treatments, improving the quality of life for our patients. TMA also advocates for patients through educational and media events, as well as advancing legislation that remove barriers to accessing the best of myositis care. Through public recognition of myositis, increased research funding, greater access to care, and better coverage and reimbursement for treatments, TMA gives its community tools and guidance to make a difference and works to orient legislators to the disease and how living with myositis impacts our patient community. Through the organization's publications, newsletters, website and support groups, TMA educates and supports patients, care partners and clinicians about myositis diseases. TMA has approximately 54 peer-led support groups across the nation that meet periodically throughout the year both virtually and in person. Education and updates are offered through our print and electronically produced newsletter sent to approximately 23,000 members, our videos on YouTube, our Myositis 101 physician and patient booklets, through TMA's social media channels and website, and through our online community forum. 353735 332363 We aim to identify the underlying causes and natural progression of myositis, develop better treatments and more effective therapies, and ultimately to create a cure for this collection of disabling diseases. 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. The Myositis Association recognizes that the myositis patient's best hope for a cure lies in research. TMA offers 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 funds research grants to initiate innovative pilot projects that will support larger funding opportunities. Since 2002, The Myositis Association has funded research almost $9 million designed to understand the underlying causes and natural progression of myositis, develop better treatments and more effective therapies, and ultimately to create a cure. 210247 64068 The Myositis Association's International Annual Patient Conference brings together myositis patients with health professionals who specialize in myositis and related fields. This event features a panel of medical experts and sessions on treatments, promising research, coping strategies, exercise techniques, and more. The Myositis Awareness Month Virtual Summit May creates 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 Publications both in print and electronic present information on diagnosis, treatments, research news, and other relevant topics that help patients and caregivers learn what they need to address their individual health care concerns. TMA additionally hosts monthly "Ask the Doc" webinars and Empowerment Clinics online to provide education and resources to the patient community year-round. The Myositis Association also provides education programs and resources for healthcare professionals to ensure that they receive the latest information on treating myositis and communicating effectively with their patients. 1193240 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 8 0 true 8 true false false false false false false false 0 false false false false false false false X 16 16 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 UT VA WA X X The Organization 8008217356 6950 Columbia Gateway Dr Suite 370 Columbia MD 21046 Chrissy Thornton Executive Dir. 40.00 0.00 X 190030 0 17241 James Mathews Director 0.30 0.00 X 0 0 0 Martha Arnold Secretary 1.50 0.00 X X 0 0 0 Laurie Boyer Vice President 0.50 0.00 X X 0 0 0 Jeff Autrey Director 0.30 0.00 X 0 0 0 Gail Bayliss Director 0.30 0.00 X 0 0 0 Rex Bickers Director 0.30 0.00 X 0 0 0 David Mochel Chairman 1.50 0.00 X X 0 0 0 Marianne Moyer Director 0.20 0.00 X 0 0 0 Tahseen Mozaffar Director 0.30 0.00 X 0 0 0 Ronne Adkins Director 0.30 0.00 X 0 0 0 Dianne Browne Director 0.30 0.00 X 0 0 0 Rodger Oren Director 0.30 0.00 X 0 0 0 Iazsmin Bauer Ventura Director 0.30 0.00 X 0 0 0 Holly Jones Director 0.30 0.00 X 0 0 0 Frank Lipiecki Director 0.30 0.00 X 0 0 0 Rich DeAugustinis Director 0.30 0.00 X 0 0 0 190030 17241 1 false true false 0 8471 99087 1327501 1463 1435059 Patient Conferences 624100 64068 64068 64068 26533 26533 0 0 0 775661 985255 -209594 -209594 -209594 0 0 1196 1196 1196 0 1317262 -145526 27729 292363 292363 210 210 40000 40000 0 195250 147630 12975 34645 0 313809 204183 48116 61510 10914 7506 1349 2059 59020 40594 7290 11136 36082 23131 6250 6701 0 13933 13933 45849 45849 0 0 0 44752 10424 29489 4839 0 97906 36064 19970 41872 37246 25498 5391 6357 0 84025 73329 8484 2212 23837 13501 3974 6362 0 248829 201436 29587 17806 0 0 9810 6747 1212 1851 5271 3625 651 995 Printing and Publications 49444 41172 5303 2969 Postage and Shipping 26005 12197 12100 1708 Dues & Subscriptions 19914 13630 2412 3872 0 1654469 1193240 254335 206894 340982 104705 174399 160751 0 325 140278 0 0 0 0 24529 32043 109324 77499 36975 31825 1863200 1429455 0 0 0 517137 428885 2957547 2327942 112094 116293 520900 458242 632994 574535 X 2214433 1549641 110120 203766 2324553 1753407 2957547 2327942 X -337207 -144270 -89669 X false true X true false X 1478991 804288 1046547 1310729 1435059 6075614 0 0 1478991 804288 1046547 1310729 1435059 6075614 799589 5276025 214625 129697 34442 1820719 802194 3001677 0 0 9077291 342452 0.58120 0.60150 X RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED RESTRICTED 12965 986 11979 6463 2243 4220 89896 74270 15626 31825 Right of Use Asset 422157 Security Deposits 6728 428885 Lease Liability 458242 458242 X 1172992 -144270 -144270 1317262 1317262 1654469 1654469 1654469 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, 2022, 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. true Europe 0 0 Research Grant Grant Making 40000 40000 40000 Europe Research Grant 40000 Check 1 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. 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 a satisfactory annual progress report. true Johns Hopkins Myositis Center 5200 Eastern Ave 301 Baltimore MD 21224 521341890 12363 0 FMV Patient Advocacy Johns Hopkins University 855 N Wolfe St Baltimore MD 21205 520595110 75000 0 FMV Research Grant Research Foundation for SUNY 35 State St Albany NY 12207 141368361 100000 0 FMV Research Grant University of Kansas 2385 Irving Hill Rd Lawrence KS 66045 480680117 80000 0 FMV Research Grant Vanderbilt Univ Medical Ctr 1211 Medical Center Dr Nashville TN 37232 352528741 25000 0 FMV Research Grant 5 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. 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 a satisfactory annual progress report. X X X false false false false false false false false false Chrissy Thornton Executive Dir. 183608 6422 17241 207271 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 reviewed by and approved by the Finance Committee and then circulated to the full Board for comment prior to release. Form 990, Part VI, Section B, Line 12c The conflict-of-interest policy is 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 and officer. The annual results are reviewed and acted upon by the Executive Committee of the Board. 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 all of whom are independent directors, and its 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. Form 990, Part XI, Line 9 Fee for Early Lease Termination = -$89669