The Myositis Association

Nonprofit profile at a glance

EIN
541660976
IRS 990 coverage
2010–2024
Forms available
Form 990 2024, Form 990-T 2024
Location
Columbia, MD, USA
Phone
8008217356
Rating
75
Verdict
SUPPORTED
Rating confidence
Moderate
Sector
Developmentally Disabled Centers

Official website

Reported finances

Revenue
$2,012,099
Expenses
$1,794,414
Assets
$2,013,453
Liabilities
$469,479

Source: IRS Form 990. Selected filing: tax year 2024. Amounts in USD.

Leadership & pay

18 people listed

Highest reported compensation

  • Paula Eichenbrenner (Executive Dir.): $180,562 total reported compensation

Source: IRS Form 990. Selected filing: tax year 2024. Names and roles reflect this filing, not necessarily current officeholders.

Overview

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

What it reported doing in 2024

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.

Operating model

Revenue model
Donor-supported. 77% of the money available for current operations came from contributions and gifts.
Distribution model
Hybrid. The nonprofit split its reported program spending across 74% for direct work, and 26% for grants.

The verdict

SUPPORTED - A large share of available resources goes toward mission work and the filed numbers largely add up. The filing reports few safeguards for money sent abroad and fundraising costs are high for each dollar raised.

Rating breakdown

  • Financial Efficiency: 62
  • Transparency & Controls: 79
  • Accountability: 95
  • Sustainability: 50
  • Growth: 100

Detailed rating inputs

Financial Efficiency

  • Mission deployment rate: 62.2%; rating input score 62
  • Program expense ratio: 70.1%; rating input score 70
  • Fundraising efficiency: $9.43 raised per $1 spent on fundraising; rating input score 36; 36th percentile among comparable filings

Transparency & Controls

  • Consistency checks: 100%; rating input score 100; 63rd percentile among comparable filings
  • Pay-setting controls: 4 of 6 controls in place; rating input score 67
    • Compensation committee: Pass
    • Independent consultant: Missing
    • Other Form 990s reviewed: Missing
    • Written employment contract: Pass
    • Compensation survey or study: Pass
    • Board or committee approval: Pass
  • Foreign activity oversight: 3 of 8 controls in place; rating input score 38
    • Claims monitoring procedures: Pass
    • Requires narrative reports: Pass
    • Conducts field audits: Fail
    • May suspend future funding: Fail
    • Requires financial reports: Pass
    • Conducts site visits: Fail
    • Requires grant agreements: Fail
    • May require repayment: Fail
  • Grant itemization coverage: 100%; rating input score 100; 72nd percentile among comparable filings
  • Major donor itemization: Yes; rating input score 100
  • Related-party transparency: Limited

Accountability

  • Independent voting board: 100%; rating input score 100; 63rd percentile among comparable filings
  • Governance controls: 7 of 8 controls in place; rating input score 88
    • Conflict-of-interest policy: Pass
    • Whistleblower policy: Pass
    • Document-retention policy: Pass
    • CEO compensation review process: NotApplicable
    • Other executive compensation review process: Fail
    • Form 990 shared with the board: Pass
    • Board meeting minutes documented: Pass
    • Audit committee oversight: Pass
    • Independent financial-statement audit: Pass

Sustainability

  • Operating margin: 10.8%; rating input score 64; 64th percentile among comparable filings
  • Total-asset coverage ratio: 1.12; rating input score 41; 41st percentile among comparable filings
  • Liabilities to assets ratio: 0.23; rating input score 40; 40th percentile among comparable filings
  • Officer compensation ratio: 10.1%; rating input score 30; 30th percentile among comparable filings

Growth

  • Program expense growth: 2% per year; rating input score 100; 22nd percentile among comparable filings
  • Revenue growth: 1% per year; rating input score 100; 15th percentile among comparable filings
  • Asset growth: 4.5% per year; rating input score 100; 32nd percentile among comparable filings

Details

  • Where the money goes: 62.2% of revenue deployed · 70.1% of spending went to programs
  • Governance: 17 of 17 board members independent · 7 of 8 filing controls reported
  • Programs: 4 filed program accomplishments · $1.3M in reported program spending
  • Leadership: top reported pay $181K · 18 people listed · 4 of 6 pay-setting controls reported
  • Consistency: 38 of 38 current checks pass
  • Schedules: 7 filed schedules · includes major donors, foreign activity, grants, and executive pay
  • Filing history: 14 filing years from 2010 to 2024
  • Contacts: How to reach this organization
  • Money network: 4 filed money-flow records
  • Related organizations: 3 filed related-organization links
  • Grant readiness: Federal tax and exclusion status, award history, and grant-maker relationships.
  • People: Everyone the filings name, and which of them the filings identify by more than a name.

Key Signals

Signals prioritize questions for review. They are not findings of misconduct.

  • Moderate — Transparency & Controls: Foreign activity oversight: 5 of 8 not reported.
  • Moderate — Financial Efficiency: Fundraising efficiency scored 36/100.
  • Review — Accountability: Governance controls: Other executive compensation review process not reported.
  • Moderate — Sustainability: Total-asset coverage ratio scored 41/100.
  • Moderate — Sustainability: Officer compensation ratio scored 30/100.
  • Moderate — Sustainability: Liabilities to assets ratio scored 40/100.