BBB Wise Giving Report for
Myositis Association

BBB Wise Giving Report issued April 2012
BBB Wise Giving Report expires April 2014


Does not meet one or more standards
This charity does not meet one or more of the 20 standards for Charity Accountability. Find out more...


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Charity Contact Information

Name: Myositis Association
Address: 1737 King Street, Suite 600
  Alexandria, VA 22314
Phone: 703-299-4850
800-821-7356
Web Address: www.myositis.org
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BBB Wise Giving Alliance Comments

Year, State Incorporated: 1993, Virginia
Affiliates: None
Stated Purpose: "to provide support to myositis patients and their families; provide connections between the Medical Advisory Board and the general medical and patient communities; and increase funding to support myositis research."

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Evaluation Conclusions

              

Myositis Association (MA) does not meet the following 6 Standards for Charity Accountability.

Standard 3: Frequency and Attendance of Board Meetings - An organization shall have a minimum of three evenly spaced meetings per year of the full governing body with a majority in attendance, with face-to-face participation. A conference call of the full board can substitute for one of the three meetings of the governing body. For all meetings, alternative modes of participation are acceptable for those with physical disabilities.

MA does not meet this Standard because:

  • Although the board of directors held five conference call board meetings, the board held one in person meeting in 2011.

Standard 7: Board Approval of Written Report on Effectiveness - Submit to the organization's governing body, for its approval, a written report that outlines the results of the aforementioned performance and effectiveness assessment and recommendations for future actions.

MA does not meet this Standard because:

  • It did not produce a written report outlining the results of its most recent effectiveness assessment.

Standard 8: Program Service Expense Ratio - Spend at least 65% of its total expenses on program activities.

MA does not meet this Standard because:

  • According to its audited financial statements for the year ended December 31, 2010, the organization spent $643,773 or 63% of its total expenses ($1,027,900) on program service activities.

Standard 14: Budget - Have a board-approved annual budget for its current fiscal year, outlining projected expenses for major program activities, fund raising, and administration.

MA does not meet this Standard because, when the organization provided budget information, it indicated that the 2012 budget:

  • Did not identify total projected program service expenses for each major program (member services and patient registry).
  • Did not identify total projected fund raising expenses.
  • Did not identify total projected administrative expenses.

Standard 16: Annual Report - Have an annual report available to all, on request, that includes: (a) the organization's mission statement, (b) a summary of the past year's program service accomplishments, (c) a roster of the officers and members of the board of directors, (d) financial information that includes (i) total income in the past fiscal year, (ii) expenses in the same program, fund raising and administrative categories as in the financial statements, and (iii) ending net assets.

MA does not meet this Standard because the 2010 annual report did not include:

  • A roster of the board of directors
  • Total expenses for each program in the same categories that appear in the organization’s financial statements (member services and patient registry) .

Standard 18: Privacy for Written Appeals & Internet Privacy - Address privacy concerns of donors by (a) providing in written appeals, at least annually, a means (e.g., such as a check off box) for both new and continuing donors to inform the charity if they do not want their name and address shared outside the organization, (b) providing a clear, prominent and easily accessible privacy policy on any of its websites that tells visitors (i) what information, if any, is being collected about them by the charity and how this information will be used, (ii) how to contact the charity to review personal information collected and request corrections, (iii) how to inform the charity (e.g., a check off box) that the visitor does not wish his/her personal information to be shared outside the organization, and (iv) what security measures the charity has in place to protect personal information.

MA does not meet this Standard because the privacy policy on this website, www.myositis.org does not indicate:

  • What security measures are in place to protect personal information that is collected.
Myositis Association (MA) meets the remaining 14 Standards for Charity Accountability.
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Programs

              

MA’s programs and services provide information, support, advocacy and research for those concerned about myositis. The annual conference brings together myositis patients with health professionals who specialize in myositis and related fields, featuring a panel of medical professionals and sessions on treatments, research, coping strategies, and exercise techniques. MA also produces print and electronic publications that present information on diagnosis, treatments, research news, and other relevant topics that aim to help patients and caregivers learn what they need to address their individual health concerns. The organization’s support groups offer members the chance to share their feelings and discuss their concerns with people in similar situations, encouraging an atmosphere of communication and compassion. MA’s advocacy efforts aim to spread the public recognition of myositis, increase research funding, garner greater access to care, and to improve coverage and reimbursement for treatments. The organization provides funding to emerging and established researchers studying myositis.

For the year ended December 31, 2010, MA's program expenses were:

  
Member services 592,708
Patient registry 51,065
Total Program Expenses: $643,773
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Governance

              

Chief Executive : Bob Goldberg, Executive Director
Compensation*:
$199,682

Chair of the Board: Marianne Moyer
Chair's Profession / Business Affiliation: Retired

Board Size: 15

Paid Staff Size: 4

*2010 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.
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Fund Raising

              

Method(s) Used:

Direct mail, special events, grant proposals, Internet appeals, planned giving, and cause-related marketing.
Fund raising costs were 24% of related contributions. (Related contributions, which totaled $854,304, are donations received as a result of fund raising activities.)
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Tax Status

              

This organization is tax-exempt under section 501(c)(3) of the Internal Revenue Code. It is eligible to receive contributions deductible as charitable donations for federal income tax purposes.
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Financial

              

The following information is based on MA's audited financial statements for the year ended December 31, 2010.

Source of Funds  
Contributions and grants 411,089
Special events 403,347
Membership dues 51,798
Annual conference 39,925
Donated materials and services 39,868
Sales 8,738
Interest and dividends 1,835
Total Income $956,600


chart



Uses of Funds as a % of Total Expenses

Programs: 62%  Fund Raising: 20%  Administrative: 18% 

Total income   $956,600
  Program expenses $643,773
  Fund raising expenses 203,798
  Administrative expenses 180,329
 
Total expenses   $1,027,900
Expenses in Excess of Income   (71,300)
Beginning net assets   547,058
Ending net assets   475,758
Total liabilities   85,619
Total assets   $561,377


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An organization may change its practices at any time without notice. A copy of this report has been shared with the organization prior to publication. It is not intended to recommend or deprecate, and is furnished solely to assist you in exercising your own judgment. If the report is about a charity and states the charity meets or does not meet the BBB Standards for Charity Accountability, it reflects the results of an evaluation of information and materials provided voluntarily by the charity. The name Better Business Bureau is a registered service mark of the Council of Better Business Bureaus, Inc.

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