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.