The Myositis Association

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Financial Vulnerability Assessment (Tuckman-Chang)

4 risk indicators measuring financial stability and operational resilience

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Financial Trends

Organization Details

Formation Year

1993

Legal Domicile

Principal Officer

Laurie Boyer

Phone

8008217356

Tax Period

2023-01-01 to 2023-12-31

The Myositis Association, founded in 1993, is a community nonprofit in the Human Services sector that reported $1.2M in total revenue in fiscal year 2023. Revenue decreased 5% compared to the prior year. Expenses of $1.9M exceeded revenue, resulting in a 51% operating deficit.

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 treatmen

Program Service Accomplishments

Program 1

Expenses: $382,541 Revenue: $80,624

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: 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.

Program 2

Expenses: $377,670

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...

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. 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.

Program 3

Expenses: $241,712

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...

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 co-hosted a scientific annual meeting with the International Myositis Assessment and Clinical Studies Group (IMACS) and the Cure Juvenile Myositis (JM) Foundation.

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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

Financial Overview (2023)

Revenue Breakdown

Contributions & Grants $1,189,812

Program Service Revenue $84,124

Investment Income $-10,414

Other Revenue $-13,623

TOTAL REVENUE $1,249,899

Expense Breakdown

Grants Paid $228,536

Salaries & Benefits $518,793

Fundraising Expenses $148,572

Program Expenses $1,197,234

Other Expenses $1,141,148

TOTAL EXPENSES $1,888,477

Year-over-Year Comparison

	2023	2022	Change
Revenue	$1,249,899	$1,317,262	-0.1%
Expenses	$1,888,477	$1,654,469	+0.1%
Net Income	$-638,578	$-337,207	+0.9%

Key Indicators

✓ Grants to Organizations ✗ Grants to Individuals ✗ Lobbying ✗ Political Activity ✓ Foreign Activities ✗ Donor Advised Fund ✓ Schedule B Required

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Financial Health Indicators

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Financial Distress Indicator

Liquidity & Cash Position

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Altman Z-Score • Liquidity Ratios • Solvency Analysis • Growth Indicators • Efficiency Metrics

Governance

Voting Members

Independent Members

Employees

Volunteers

Governance Policies

✗ Conflict of Interest Policy

✗ Whistleblower Policy

✗ Document Retention Policy

Special Practices & Reported Activities

✗ Operated a School

✗ Operated a Hospital

✗ Provided First Class Travel

✗ Reported Conflict of Interest

✗ Reported Asset Diversion

✗ Excess Benefit Transaction

✗ Made Political Expenditures

✗ Engaged in Lobbying

✗ Operated Donor Advised Fund

✗ Maintained Art Collections

✗ Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers

$219,804

Total Directors

Key Employees

Highest Compensated

reported

Name	Title	Hours/Week	Role	Reportable Comp	Other Comp	Total
Rhonda Buckley-Bishop Interim	Executive Dir.	40.00	Officer	$183,137	$0	$183,137
Chris Thornton Outgoing	Executive Dir.	40.00	Officer	$20,436	$0	$20,436
Paula Eichenbrenner Incoming	Executive Dir.	40.00	Officer	$16,231	$0	$16,231
Martha Arnold	Secretary	1.50	Officer Director	$0	$0	$0
Laurie Boyer Vice Chair	Director	1.50	Officer Director	$0	$0	$0
Jeff Autrey	Director	0.50	Director	$0	$0	$0
Gail Bayliss	Director	0.50	Director	$0	$0	$0
Rex Bickers	Director	0.50	Director	$0	$0	$0
David Mochel Chair	Director	1.50	Officer Director	$0	$0	$0
Marianne Moyer	Director	0.50	Director	$0	$0	$0
Ronne Adkins	Director	0.50	Director	$0	$0	$0
Rodger Oren	Director	0.50	Director	$0	$0	$0
Iazsmin Bauer Ventura	Director	0.50	Director	$0	$0	$0
Holly Jones	Director	0.50	Director	$0	$0	$0
Frank Lipiecki	Director	0.50	Director	$0	$0	$0
Rich DeAugustinis	Treasurer	1.50	Officer Director	$0	$0	$0
Ricky Marks	Director	0.50	Director	$0	$0	$0
Nita Sharma	Director	0.50	Director	$0	$0	$0
Howard Gerrin	Director	0.50	Director	$0	$0	$0
Tahseen Mozaffar	Director	0.50	Director	$0	$0	$0

Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year	Revenue	Expenses	Assets	Net Income
2024	No data	No data	No data	No data
2023	$1,249,899	$1,888,477	$1,779,524	$-638,578
2022	$1,317,262	$1,654,469	$2,327,942	$-337,207
2021	$1,770,917	$1,269,788	$2,957,547	$501,129
2020	$1,179,750	$1,183,055	$2,242,240	$-3,305
2019	$1,016,099	$1,622,977	$2,226,058	$-606,878
2018	$1,762,199	$1,584,809	$2,838,260	$177,390