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: Verified by RoundPaper

FY 2024

Verified NonprofitLast Filed 2024EIN 54-1660976

The Myositis Association

Alexandria, VANTEE: P82ZFounded 1993Website

mission statement

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

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Total Revenue

$2.0M

FY 2024

Program Spending

70.1%

of total expenses

Known Funders

2019–2024 filings

Key Metrics (FY 2024)

The Numbers

$2.0M

Total Assets

$1.5M net

10.33 mo

Operating Reserves

FY 2024

+61%

Revenue Growth

YoY

Total Employees

FY 2024

Funding Track Record

Backed by 36 Institutional Funders

$701K raised across 84 grants · +$100 committed (2019–2024 filings)

Funder Geography

Funders across 23 states (2019–2024 filings)

Institutional Funding by Year

PaidCommittedBoth

Funder	Location	Total Awarded
Network for Good Inc	Washington, DC	$135,152
The Community Foundation of Sarasota CO	SARASOTA, FL	$123,499
American Online Giving Foundation Inc	NEWARK, DE	$76,801
Miller-Mellor Association	Prairie Village, KS	$65,000
Fidelity Investments Charitable Gift Fund	BOSTON, MA	$60,590
Donor Advised Charitable Giving Inc	SAN FRANCISCO, CA	$34,612
American Endowment Foundation	HUDSON, OH	$32,500
Bill M and Cecile Autrey Ham Charitable Foundation	AUSTIN, TX	$30,000
Vanguard Charitable Endowment Program	SOUTHEASTERN, PA	$26,500
Gs Donor Advised Philanthropy Fund for Wealth Management Inc	NEW YORK, NY	$20,000

Total tracked: $700,577 across 84 grants · +$100 committed across 1 commitment (2019–2024 filings)

Totals reflect grants as reported on funder tax returns. Timing may not match recipient revenue: funder and recipient fiscal years often differ, and grants paid by a funder in one year may be recognized by the recipient in a different year.

Programs (FY 2024)

What They Do

$527K in expenses

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.

$407K in expenses

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.

$186K in expenses

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.

$138K in expenses

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.

Financial History