Maryland · Nonprofit
The Myositis Association
The Myositis Association (Maryland) receives grants from 46 organizations whose IRS filings report $1,275,430 to it, the largest being THE COMMUNITY FOUNDATION OF SARASOTA CO INC ($215,285). 21 of them have funded it in more than one year, and 78% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- Revenue FY2024
- $2.0M
- Funders on record
- 46
- Grants received
- $1.3M
- Net assets
- $1.5M
What The Myositis Association does
Mission
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
As stated on its FY2024 Form 990.
Programs
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.
$382,541 spentof which $598 as grants$80,624 earned by the program32% of program spendingResearch 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.
$377,670 spentof which $227,443 as grants32% of program spendingOther 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…
$241,712 spent20% of program spendingOTHER 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…
$195,311 spentof which $495 as grants16% of program spending
The 4 programs described on its FY2023 Form 990, listed largest first by expense. Program spending in total: $1,197,234.
The organization over time
Each line starts at 100 in 2017, so what you read is the shape rather than the size: 150 means half as much again as 2017, 50 means half. The number beside each label in the key is where it ended. The shaded band is where the middle 50% of its peers' revenue would sit, given their growth.
Balance sheet
Total assets and total liabilities at each year end, in dollars. The largest one-year move in total assets was 2020 to 2021, from $2.2M to $3.0M (+32%).
How it's funded, over time
Each bar is one year's revenue split into where it came from, and every bar is the same height — these are shares, not amounts, so a year that raised twice as much looks the same size. Hover a bar for the split.
Government-grant reliance: 2017 1% · 2020 11% · 2021 5% · 2022 8%. Grants only. Government contracts and fees sit inside program revenue.
78% of The Myositis Association’s revenue is contributions — about as donation-reliant as the typical peer (81% for the typical peer).
Surplus & reserves
Operating surplus or deficit each year, and months of liquidity in hand. 4 of the last 8 reported years ran a deficit.
reserve
Leadership and staff
The officers, directors, trustees and key employees listed on each return. Joined and no longer listed compare each filing with the year before, matching people by surname and first initial; a year after a gap, or a roster under three people, has no comparison.
Who funds it, year by year
2017 → 2023: the base broadened from 10 funders to 12 funders, grant income fell $149k → $59k.
15 of 46 of your funders are donor-advised or pass-through sponsors (tagged DAF) — 78% of grant dollars received. That money is really individual donors directing a sponsor; the institutions to cultivate are the non-DAF funders.
From the IRS filings of The Myositis Association’s funders (the co-funder graph). Top 30 of 46 funders by total. Association, not causation. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How concentrated its funding is
The Myositis Association has a broad base — no single funder exceeds 17% of grant income, and it takes 4 funders to reach half.
the vertical line marks half of all grant income — 4 funders to its left
80% of the income these shares are computed over arrives through pass-through sponsors or from payers whose filings do not say what kind of payment it is. Concentration is still measured over all of it, because the money is real; what it does not support is a claim about how many institutions have chosen to fund The Myositis Association.
Largest funder’s share by year: 2017 34% · 2018 37% · 2019 34% · 2020 42% · 2021 30% · 2022 17% · 2023 24% — diversifying over time.
“Effective funders” = inverse Herfindahl index (1 / Σ shareᵢ²) — the number of equal-sized funders that would give the same concentration. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
How long its funders stay
32% of The Myositis Association's funders are still giving 3 years after their first grant; 46% give in more than one year at all.
Share of funders still giving k years after their first recorded grant, pooled across every acquisition cohort. A funder counts as retained in a year only if it made a grant that year. Measured to FY2023, the last fiscal year that has finished arriving — a funder cannot be counted as lapsed in a year most filers have not reached.
Where its funders are
78% of The Myositis Association's grant income arrives through donor-advised or pass-through sponsors, whose addresses record where the money is held rather than where the donor is. Of the $278k that is directly attributable, 100% of it comes from funders outside Maryland, across 18 states.
In-state vs out-of-state, by year
Funder states come from each funder’s own filing. $998k arriving through sponsors registered in 13 states is excluded from the map and the split above: a sponsor holds money on a donor’s behalf, so its registered address would place those dollars somewhere no donor need ever have been. Trends are read to FY2023, the last fiscal year that has finished arriving. FY2024–FY2026 are still being filed and are shown unshaded; they do not move any figure on this page.
Against its field
The Myositis Association runs a healthier operating margin than half of the 11,263 human services nonprofits its size.
this organization peer median middle 50% of peers· 11,263 human services nonprofits $1M–$10M, FY2024
Organizations like The Myositis Association
Organizations whose mission and program text most resemble this one, by semantic similarity over every organization in the US filings — the closest peers, and often the clearest route to shared or prospective funders.
In Maryland
Nationally
Read directly from this organization’s own Form 990, as neutral context.
Where the money goes
70% of spending goes to programs.
Governance
Public support
61%
Share of support from the public (Schedule A) — the basis for its public-charity status.
Footprint & structure
Files a return copy in 14 states
Screen this organization
A dated, signed PDF of the compliance screen for The Myositis Association: IRS status (Business Master File, Publication 78, auto-revocation), the OFAC sanctions lists, the Internal Revenue Bulletin, and California registration, with the Rev. Proc. 2018-32 §8.01 reliance elements stated element by element. Generated from the current files at the moment you download it.
Screens are triage, not determinations; a source that cannot be read reports not screened, never clear. Screen this nonprofit · How the screen works · on the API as GET /api/screening/{ein}?format=pdf
Questions and answers
- Who funds The Myositis Association?
- The Myositis Association (Maryland) receives grants from 46 organizations whose IRS filings report $1,275,430 to it, the largest being THE COMMUNITY FOUNDATION OF SARASOTA CO INC ($215,285). 21 of them have funded it in more than one year, and 78% of the money arrives through donor-advised or pass-through sponsors rather than from an institution directly.
- How many funders does The Myositis Association have?
- IRS filings report 46 organizations giving $1,275,430 in grants to The Myositis Association, 21 of which have funded it in more than one year.
- Who is the largest funder of The Myositis Association?
- THE COMMUNITY FOUNDATION OF SARASOTA CO INC is the largest funder on record, with $215,285 in grants. The full list of funders is on this page.
- How can an organization like The Myositis Association find more funders?
- Start with the funders already giving here, then look at the foundations that back similar organizations in Maryland. The funding by cause and by state pages list the largest funders for a given area and how to approach them.
These figures are read directly from IRS Form 990 / 990-PF e-file XML: this organization’s own return for FY2024 (financials across 2017–2024), and the filings of 46 funders that report grants to it. “On record” means captured in the filings we have parsed — a funder that does not e-file, or whose grant detail is not itemized, will not appear. Filings run roughly 12–24 months behind. Trends on this page end at FY2023, the last fiscal year that has finished arriving; later years are shown and marked, and move no figure. Data on this page was exported October 14, 2026. What this page cannot tell you · view filing