Totals
- Total revenue
- $1,249,899
- Total expenses
- $1,888,477
- Contributions and grants received
- $1,189,812
- Grants paid
- $228,536
- Program service revenue
- $84,124
- Investment income
- -$10,414
- Other revenue
- -$13,623
- Total assets, end of year
- $1,779,524
- Total liabilities, end of year
- $489,420
- Net assets or fund balances, end of year
- $1,290,104
- Program services expenses (Part IX)
- $1,197,234
- Management and general expenses
- $542,671
- Fundraising expenses
- $148,572
- Program service expenses (Part III)
- $1,197,234
Program services were 63.4% of total expenses calculated — Part IX's program-services column over total expenses, both as filed.
Line items
Every line the filer filed in Parts VIII, IX and X, as filed and in filed order. Blank columns are left out, and the lines are not forced to add up to the totals above.
Revenue
Part VIII, the statement of revenue.
-
1a · Federated campaigns
$2,009
-
1f · All other contributions, gifts and grants
$1,187,803
-
2a · Program service revenue: Outlook Advertising
total $3,500 · unrelated business $3,500
-
2b · Program service revenue: Patient Conferences
total $80,624 · related or exempt $80,624
-
3 · Investment income
total $34,494 · excluded $34,494
-
4 · Income from investment of tax-exempt bond proceeds
total $0
-
5 · Royalties
total $0
-
6d · Net rental income or loss
total $0
-
7a · Gross sales of assets other than inventory
securities $595,051 · other assets $550
-
7b · Less cost or other basis and sales expenses
securities $638,556 · other assets $1,953
-
7c · Gain or loss
securities -$43,505 · other assets -$1,403
-
7d · Net gain or loss
total -$44,908 · related or exempt -$44,908
-
8c · Net income from fundraising events
total $0
-
9c · Net income from gaming
total $0
-
10a · Gross sales of inventory
$16,722
-
10b · Cost of goods sold
$30,345
-
10c · Net income from sales of inventory
total -$13,623 · excluded -$13,623
-
11e · Other revenue, total
$0
Functional expenses
Part IX, the statement of functional expenses.
-
1 · Grants to domestic organizations and governments
total $152,000 · program services $152,000
-
2 · Grants to domestic individuals
total $1,093 · program services $1,093
-
3 · Grants to foreign organizations and individuals
total $75,443 · program services $75,443
-
4 · Benefits paid to or for members
total $0
-
5 · Compensation of officers, directors and key employees
total $235,401 · program services $26,621 · management and general $203,456 · fundraising $5,324
-
6 · Compensation of disqualified persons
total $0
-
7 · Other salaries and wages
total $226,272 · program services $198,608 · management and general $13,661 · fundraising $14,003
-
8 · Pension plan contributions
total $3,248 · program services $2,775 · management and general $237 · fundraising $236
-
9 · Other employee benefits
total $31,379 · program services $26,807 · management and general $2,293 · fundraising $2,279
-
10 · Payroll taxes
total $22,493 · program services $20,411 · management and general $530 · fundraising $1,552
-
11a · Fees: management
total $0
-
11b · Fees: legal
total $20,708 · management and general $20,708
-
11c · Fees: accounting
total $86,526 · management and general $86,526
-
11d · Fees: lobbying
total $0
-
11e · Fees: professional fundraising services
total $0
-
11f · Fees: investment management
total $12,670 · management and general $12,670
-
11g · Fees: other
total $397,101 · program services $135,624 · management and general $148,677 · fundraising $112,800
-
12 · Advertising and promotion
total $7,979 · program services $7,952 · management and general $27
-
13 · Office expenses
total $102,060 · program services $70,390 · management and general $29,740 · fundraising $1,930
-
14 · Information technology
total $42,408 · program services $36,992 · management and general $2,716 · fundraising $2,700
-
15 · Royalties
total $0
-
16 · Occupancy
total $87,114 · program services $74,423 · management and general $6,365 · fundraising $6,326
-
17 · Travel
total $26,261 · program services $24,365 · management and general $1,770 · fundraising $126
-
18 · Travel or entertainment for public officials
total $0
-
19 · Conferences, conventions and meetings
total $327,917 · program services $327,917
-
20 · Interest
total $0
-
21 · Payments to affiliates
total $0
-
22 · Depreciation, depletion and amortization
total $10,121 · program services $8,646 · management and general $740 · fundraising $735
-
23 · Insurance
total $3,669 · program services $3,135 · management and general $268 · fundraising $266
-
24a · Other expenses: Licenses & Fees
total $11,990 · management and general $11,990
-
24b · Other expenses: Dues & Subscriptions
total $4,624 · program services $4,032 · management and general $297 · fundraising $295
-
24e · All other expenses
total $0
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $104,705 · end of year $53,430
-
2 · Savings and temporary cash investments
beginning of year $160,751 · end of year $11,088
-
3 · Pledges and grants receivable
end of year $0
-
4 · Accounts receivable
beginning of year $140,278 · end of year $43,000
-
5 · Loans and receivables from officers and key people
end of year $0
-
6 · Loans and receivables from disqualified persons
end of year $0
-
7 · Other notes and loans receivable
end of year $0
-
8 · Inventories for sale or use
end of year $0
-
9 · Prepaid expenses and deferred charges
beginning of year $32,043 · end of year $34,101
-
10a · Land, buildings and equipment: cost or other basis
$108,653
-
10b · Land, buildings and equipment: accumulated depreciation
$85,442
-
10c · Land, buildings and equipment, net
beginning of year $31,825 · end of year $23,211
-
11 · Investments: publicly traded securities
beginning of year $1,429,455 · end of year $1,237,590
-
12 · Investments: other securities
end of year $0
-
13 · Investments: program-related
end of year $0
-
14 · Intangible assets
end of year $0
-
15 · Other assets
beginning of year $428,885 · end of year $377,104
-
17 · Accounts payable and accrued expenses
beginning of year $116,293 · end of year $98,484
-
25 · Other liabilities
beginning of year $458,242 · end of year $390,936
-
27 · Net assets without donor restrictions
beginning of year $1,549,641 · end of year $1,100,057
-
28 · Net assets with donor restrictions
beginning of year $203,766 · end of year $190,047
Mission and programs · 2023
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
Activities or mission (Part I)
In 2023, The Myositis Association (TMA) celebrated our 30th year of service to the worldwide myositis community. TMA Myositis Africa was established as our newest regional support group, with support from the TMA Women of Color Affinity Group. Two new research grants were approved, in myositis-associated interstitial lung disease and predictive modeling of inclusion body myositis. Two investigators with TMA-funded projects concluded their studies in 2023, with findings on immune checkpoint inhibitor-induced myositis and the pathological role of B cells in myositis. TMA continued our long-running International Annual Patient Conference, hosted the "Beyond Limits" virtual summit during Myositis Awareness Month, and partnered with the Kansas University Medical Center on a virtual Regional Conference for Myositis Patients.
-
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.
Expenses $382,541 · Grants $598 · Revenue $80,624
-
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.
Expenses $377,670 · Grants $227,443
-
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.
Expenses $241,712
As filed on the 2023 return. The filer continues this part on Schedule O, which is not shown here.
Listed in Part VII
-
Rhonda Buckley-Bishop Interim
Executive Dir.
- Total calculated
- $183,137
- From this org
- $183,137
- From related orgs
- $0
- Other
- $0
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $183,137
- Bonus
- not reported
- Other
- not reported
- Deferred
- not reported
- Nontaxable benefits
- not reported
- Filer's total
- $183,137
-
Chris Thornton Outgoing
Executive Dir.
- Total calculated
- $20,436
- From this org
- $20,436
- From related orgs
- $0
- Other
- $0
- Hours/week
- 40
-
Paula Eichenbrenner Incoming
Executive Dir.
- Total calculated
- $16,231
- From this org
- $16,231
- From related orgs
- $0
- Other
- $0
- Hours/week
- 40
-
Martha Arnold
Secretary
- Total calculated
- $0
- Hours/week
- 1.5
-
Laurie Boyer Vice Chair
Director
- Total calculated
- $0
- Hours/week
- 1.5
-
Jeff Autrey
Director
- Total calculated
- $0
- Hours/week
- 0.5
-
Gail Bayliss
Director
- Total calculated
- $0
- Hours/week
- 0.5
-
Rex Bickers
Director
- Total calculated
- $0
- Hours/week
- 0.5
-
David Mochel Chair
Director
- Total calculated
- $0
- Hours/week
- 1.5
-
Marianne Moyer
Director
- Total calculated
- $0
- Hours/week
- 0.5
-
Ronne Adkins
Director
- Total calculated
- $0
- Hours/week
- 0.5
-
Rodger Oren
Director
- Total calculated
- $0
- Hours/week
- 0.5
-
Iazsmin Bauer Ventura
Director
- Total calculated
- $0
- Hours/week
- 0.5
-
Holly Jones
Director
- Total calculated
- $0
- Hours/week
- 0.5
-
Frank Lipiecki
Director
- Total calculated
- $0
- Hours/week
- 0.5
-
Rich DeAugustinis
Treasurer
- Total calculated
- $0
- Hours/week
- 1.5
-
Ricky Marks
Director
- Total calculated
- $0
- Hours/week
- 0.5
-
Nita Sharma
Director
- Total calculated
- $0
- Hours/week
- 0.5
-
Howard Gerrin
Director
- Total calculated
- $0
- Hours/week
- 0.5
-
Tahseen Mozaffar
Director
- Total calculated
- $0
- Hours/week
- 0.5
Compensation is as filed in Part VII: reportable pay from this organization and from related organizations, other compensation, and hours per week. The total, marked calculated, is our sum of the three dollar columns, with a blank column counted as $0; the form itself has no total. On a Form 990-EZ the columns are Part IV's instead, and on a Form 990-PF Part VIII's — compensation, contributions to benefit plans, and expense account — and the total sums those. A Schedule J breakdown is as filed: base pay, bonus, other, deferred compensation and nontaxable benefits from this organization, with any from related organizations beside each, and the filer's own total. It is shown with the Part VII listing of the same name on the same return. The form gives no key between the two, so that pairing is ours, and is marked matched by us.
Schedule J
Answered yes
- 3 · Compensation committee
- 3 · Compensation survey or study
- 3 · Approval by the board or compensation committee
Answered no
- 4a · Severance or change-of-control payment
- 4b · Supplemental nonqualified retirement plan
- 4c · Equity-based compensation arrangement
- 5a · Pay contingent on this organization's revenues
- 5b · Pay contingent on a related organization's revenues
- 6a · Pay contingent on this organization's net earnings
- 6b · Pay contingent on a related organization's net earnings
- 7 · Other non-fixed payments
- 8 · Paid under the initial-contract exception
Part I's answers as filed. A line not listed was left unanswered; on lines 1a and 3 that means the box was not checked.
Grants on this return
-
$50,000
Research Grant
-
$50,000
Research Grant
-
$50,000
Research Grant
Provenance
- Return type
- form_990
- Tax year
- 2023
- Filed
- 14 November 2024
- IRS schema version
- 2023v5.1
- Source object
- 202423199349315512
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