Totals
- Total revenue
- $1,317,262
- Total expenses
- $1,654,469
- Contributions and grants received
- $1,435,059
- Grants paid
- $332,573
- Program service revenue
- $64,068
- Investment income
- -$183,061
- Other revenue
- $1,196
- Total assets, end of year
- $2,327,942
- Total liabilities, end of year
- $574,535
- Net assets or fund balances, end of year
- $1,753,407
- Program services expenses (Part IX)
- $1,193,240
- Management and general expenses
- $254,335
- Fundraising expenses
- $206,894
- Program service expenses (Part III)
- $1,193,240
Program services were 72.1% 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
$8,471
-
1e · Government grants (contributions)
$99,087
-
1f · All other contributions, gifts and grants
$1,327,501
-
1g · Noncash contributions included above
$1,463
-
2a · Program service revenue: Patient Conferences
total $64,068 · related or exempt $64,068
-
3 · Investment income
total $26,533 · excluded $26,533
-
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 $775,661
-
7b · Less cost or other basis and sales expenses
securities $985,255
-
7c · Gain or loss
securities -$209,594
-
7d · Net gain or loss
total -$209,594 · related or exempt -$209,594
-
8c · Net income from fundraising events
total $0
-
9c · Net income from gaming
total $0
-
10a · Gross sales of inventory
$1,196
-
10c · Net income from sales of inventory
total $1,196 · excluded $1,196
-
11e · Other revenue, total
$0
Functional expenses
Part IX, the statement of functional expenses.
-
1 · Grants to domestic organizations and governments
total $292,363 · program services $292,363
-
2 · Grants to domestic individuals
total $210 · program services $210
-
3 · Grants to foreign organizations and individuals
total $40,000 · program services $40,000
-
4 · Benefits paid to or for members
total $0
-
5 · Compensation of officers, directors and key employees
total $195,250 · program services $147,630 · management and general $12,975 · fundraising $34,645
-
6 · Compensation of disqualified persons
total $0
-
7 · Other salaries and wages
total $313,809 · program services $204,183 · management and general $48,116 · fundraising $61,510
-
8 · Pension plan contributions
total $10,914 · program services $7,506 · management and general $1,349 · fundraising $2,059
-
9 · Other employee benefits
total $59,020 · program services $40,594 · management and general $7,290 · fundraising $11,136
-
10 · Payroll taxes
total $36,082 · program services $23,131 · management and general $6,250 · fundraising $6,701
-
11a · Fees: management
total $0
-
11b · Fees: legal
total $13,933 · management and general $13,933
-
11c · Fees: accounting
total $45,849 · management and general $45,849
-
11d · Fees: lobbying
total $0
-
11e · Fees: professional fundraising services
total $0
-
11f · Fees: investment management
total $0
-
11g · Fees: other
total $44,752 · program services $10,424 · management and general $29,489 · fundraising $4,839
-
12 · Advertising and promotion
total $0
-
13 · Office expenses
total $97,906 · program services $36,064 · management and general $19,970 · fundraising $41,872
-
14 · Information technology
total $37,246 · program services $25,498 · management and general $5,391 · fundraising $6,357
-
15 · Royalties
total $0
-
16 · Occupancy
total $84,025 · program services $73,329 · management and general $8,484 · fundraising $2,212
-
17 · Travel
total $23,837 · program services $13,501 · management and general $3,974 · fundraising $6,362
-
18 · Travel or entertainment for public officials
total $0
-
19 · Conferences, conventions and meetings
total $248,829 · program services $201,436 · management and general $29,587 · fundraising $17,806
-
20 · Interest
total $0
-
21 · Payments to affiliates
total $0
-
22 · Depreciation, depletion and amortization
total $9,810 · program services $6,747 · management and general $1,212 · fundraising $1,851
-
23 · Insurance
total $5,271 · program services $3,625 · management and general $651 · fundraising $995
-
24a · Other expenses: Printing and Publications
total $49,444 · program services $41,172 · management and general $5,303 · fundraising $2,969
-
24b · Other expenses: Postage and Shipping
total $26,005 · program services $12,197 · management and general $12,100 · fundraising $1,708
-
24c · Other expenses: Dues & Subscriptions
total $19,914 · program services $13,630 · management and general $2,412 · fundraising $3,872
-
24e · All other expenses
total $0
Balance sheet
Part X, book values.
-
1 · Cash, non-interest-bearing
beginning of year $340,982 · end of year $104,705
-
2 · Savings and temporary cash investments
beginning of year $174,399 · end of year $160,751
-
3 · Pledges and grants receivable
end of year $0
-
4 · Accounts receivable
beginning of year $325 · end of year $140,278
-
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 $24,529 · end of year $32,043
-
10a · Land, buildings and equipment: cost or other basis
$109,324
-
10b · Land, buildings and equipment: accumulated depreciation
$77,499
-
10c · Land, buildings and equipment, net
beginning of year $36,975 · end of year $31,825
-
11 · Investments: publicly traded securities
beginning of year $1,863,200 · end of year $1,429,455
-
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 $517,137 · end of year $428,885
-
17 · Accounts payable and accrued expenses
beginning of year $112,094 · end of year $116,293
-
25 · Other liabilities
beginning of year $520,900 · end of year $458,242
-
27 · Net assets without donor restrictions
beginning of year $2,214,433 · end of year $1,549,641
-
28 · Net assets with donor restrictions
beginning of year $110,120 · end of year $203,766
Mission and programs · 2022
Mission
The Myositis Association 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 rare disease. Symptoms of myositis include but are not limited to muscle weakness and pain fatigue tripping or falling trouble swallowing difficulty breathing 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, and there are often no clear guidelines in the medical community on how to effectively manage patients with myositis. Nevertheless, myositis is a serious and often treatable illn
Activities or mission (Part I)
In 2022, we expanded the footprint of TMA's virtual outreach to include new educational programming, the creation of additional Affinity Groups, and the second year of a national signature awareness and fundraising campaign. TMA returned to an in-person International Annual Patient Conference, which also had a virtual component for those not comfortable with, or unable to, travel. It was well attended and successful in its mission to bring the myositis patient and medical communities together.
-
TMA's Support Groups offer members the chance to share their feelings and discuss their concerns with people in similar situations. These groups offered in person and virtually encourage an atmosphere of communication and compassion. TMA supports Affinity Group meeting circles with outreach efforts targeted toward supporting and extending our organization's reach into new communities. The term affinity group is used as a bringing together of people who have commonality. Affinity groups are for individuals who identify as members of the group and can speak to the experience of being a part of the group from an I perspective. These groups also help to address growing health equity and access issues in the rare disease industry. Increased awareness of myositis has the potential to lead to earlier diagnosis and more effective treatments, improving the quality of life for our patients. TMA also advocates for patients through educational and media events, as well as advancing legislation that remove barriers to accessing the best of myositis care. Through public recognition of myositis, increased research funding, greater access to care, and better coverage and reimbursement for treatments, TMA gives its community tools and guidance to make a difference and works to orient legislators to the disease and how living with myositis impacts our patient community. Through the organization's publications, newsletters, website and support groups, TMA educates and supports patients, care partners and clinicians about myositis diseases. TMA has approximately 54 peer-led support groups across the nation that meet periodically throughout the year both virtually and in person. Education and updates are offered through our print and electronically produced newsletter sent to approximately 23,000 members, our videos on YouTube, our Myositis 101 physician and patient booklets, through TMA's social media channels and website, and through our online community forum.
Expenses $629,258
-
We aim to identify the underlying causes and natural progression of myositis, develop better treatments and more effective therapies, and ultimately to create a cure for this collection of disabling diseases. 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. The Myositis Association recognizes that the myositis patient's best hope for a cure lies in research. TMA offers 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 funds research grants to initiate innovative pilot projects that will support larger funding opportunities. Since 2002, The Myositis Association has funded research almost $9 million designed to understand the underlying causes and natural progression of myositis, develop better treatments and more effective therapies, and ultimately to create a cure.
Expenses $353,735 · Grants $332,363
-
The Myositis Association's International Annual Patient Conference brings together myositis patients with health professionals who specialize in myositis and related fields. This event features a panel of medical experts and sessions on treatments, promising research, coping strategies, exercise techniques, and more. The Myositis Awareness Month Virtual Summit May creates 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 Publications both in print and electronic present information on diagnosis, treatments, research news, and other relevant topics that help patients and caregivers learn what they need to address their individual health care concerns. TMA additionally hosts monthly "Ask the Doc" webinars and Empowerment Clinics online to provide education and resources to the patient community year-round. The Myositis Association also provides education programs and resources for healthcare professionals to ensure that they receive the latest information on treating myositis and communicating effectively with their patients.
Expenses $210,247 · Revenue $64,068
As filed on the 2022 return.
Listed in Part VII
-
Chrissy Thornton
Executive Dir.
- Total calculated
- $207,271
- From this org
- $190,030
- From related orgs
- $0
- Other
- $17,241
- Hours/week
- 40
Schedule J breakdown matched by us
- Base
- $183,608
- Bonus
- $6,422
- Other
- not reported
- Deferred
- not reported
- Nontaxable benefits
- $17,241
- Filer's total
- $207,271
-
James Mathews
Director
- Total calculated
- $0
- Hours/week
- 0.3
-
Martha Arnold
Secretary
- Total calculated
- $0
- Hours/week
- 1.5
-
Laurie Boyer
Vice President
- Total calculated
- $0
- Hours/week
- 0.5
-
Jeff Autrey
Director
- Total calculated
- $0
- Hours/week
- 0.3
-
Gail Bayliss
Director
- Total calculated
- $0
- Hours/week
- 0.3
-
Rex Bickers
Director
- Total calculated
- $0
- Hours/week
- 0.3
-
David Mochel
Chairman
- Total calculated
- $0
- Hours/week
- 1.5
-
Marianne Moyer
Director
- Total calculated
- $0
- Hours/week
- 0.2
-
Tahseen Mozaffar
Director
- Total calculated
- $0
- Hours/week
- 0.3
-
Ronne Adkins
Director
- Total calculated
- $0
- Hours/week
- 0.3
-
Dianne Browne
Director
- Total calculated
- $0
- Hours/week
- 0.3
-
Rodger Oren
Director
- Total calculated
- $0
- Hours/week
- 0.3
-
Iazsmin Bauer Ventura
Director
- Total calculated
- $0
- Hours/week
- 0.3
-
Holly Jones
Director
- Total calculated
- $0
- Hours/week
- 0.3
-
Frank Lipiecki
Director
- Total calculated
- $0
- Hours/week
- 0.3
-
Rich DeAugustinis
Director
- Total calculated
- $0
- Hours/week
- 0.3
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
-
$100,000
Research Grant
-
$80,000
Research Grant
-
$75,000
Research Grant
-
$25,000
Research Grant
-
$12,363
Patient Advocacy
Provenance
- Return type
- form_990
- Tax year
- 2022
- Filed
- 9 November 2023
- IRS schema version
- 2022v5.0
- Source object
- 202333139349304193
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