Myositis Association
Public records show a registered, tax-exempt organization in good standing.
What it says it does
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
- Income
- $2.0 million
- Spending
- $1.8 million
- Spent on programs
- 70%
- Reserves
- 7.4 months of spending
- Largest source of income
- donations and private grants, 78%
- Employees
- 4
- Volunteers
- 92
- Highest pay
- $180,562, executive dir.
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Financial health
Good: 89 out of 100. Higher than 76% of charities in its peer group (human services, $1m to $10m).
Reserves
28 of 35Spendable reserves would cover 7.4 months of spending.
Debt
16 of 20It owes 23% of what it owns.
Living within its means
15 of 15Income exceeded spending by 11% of income.
Income trend
15 of 15Income rose 61% on the year before.
Spending floor
15 of 1570% of spending went to programs and raising each dollar of donations cost 11 cents.
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Governance
Strong: 100 out of 100. Higher than 65% of charities in its peer group (human services, $1m to $10m).
Independent board
25 of 2517 of 17 voting board members are independent.
Conflict of interest policy
15 of 15Has a written conflict of interest policy.
Whistleblower policy
8 of 8Has a written whistleblower policy.
Record keeping policy
7 of 7Has a written policy on keeping and destroying records.
Board minutes
5 of 5Keeps minutes of board meetings.
Board sees the tax return
10 of 10Gave the board a copy of this return before filing it.
Pay set independently
5 of 5Sets its chief executive's pay through independent review and comparison.
Independent check of accounts
15 of 15Its accounts were audited by an independent accountant.
No reported misuse
10 of 10Reports no diversion of assets, excess benefits or loans to insiders.
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Impact evidence
Describes programs. Its tax return describes what it does but we have found no measurable results in it.
Programs described in its return (4)
- $527,150 spent. 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.
- $407,313 spent. 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.
- $186,301 spent. 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.
- $137,790 spent. 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.
Source: Form 990 for the year ending December 31, 2024, filed with the Internal Revenue Service. Rating method 2026.2. How we rate
Legitimacy checks
Is it registered with the IRS? Passed.
Listed in the IRS master file of tax-exempt organizations as a 501(c)(3) charitable organization.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Has the IRS revoked its tax-exempt status? Passed.
Not on the IRS automatic revocation list.
Source: Automatic revocation of exemption list, Internal Revenue Service, file dated October 13, 2026.
Are donations tax-deductible? Passed.
On the IRS list of organizations eligible to receive tax-deductible contributions.
Source: Publication 78 data: organizations eligible for tax-deductible contributions, Internal Revenue Service, file dated October 13, 2026.
Is it keeping up with its IRS filings? Passed.
Most recent return on file covers the year ending December 2024.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
How long has it been tax-exempt? Passed.
Recognized by the IRS since August 1993.
Source: Exempt Organizations Business Master File, Internal Revenue Service, file dated October 13, 2026.
Is it in good standing with state regulators? Passed.
Not on California's list of charities barred from soliciting. Other states are not yet checked.
Source: May Not Operate or Solicit for Charitable Purposes list, California Attorney General, Registry of Charities and Fundraisers, file dated October 21, 2026.
Ratings and checks are our reading of public records, using the published method. They are not a statement about anyone's honesty. If you work for this organization, you can send corrections or results, confirm you want gifts through Veridonate, or ask to be removed from giving.