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CHARITY REVIEW

Charcot-Marie-Tooth Association

Standards Not Met
Standards Not Met
6 7 11 16 18
(800) 606-2682
Post Office Box 105
Glenolden, PA, 19036
https://www.cmtausa.org
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Standards For Charity Accountability

Governance

  1. Board Oversight
  2. Board Size
  3. Board Meetings
  4. Board Compensation
  5. Conflict of Interest

Measuring Effectiveness

  1. Effectiveness Policy
  2. Effectiveness Report

Finances

  1. Program Expenses
  2. Fundraising Expenses
  3. Accumulating Funds
  4. Audit Report
  5. Detailed Expense Breakdown
  6. Accurate Expense Reporting
  7. Budget Plan

Fundraising & Info

  1. Truthful Materials
  2. Annual Report
  3. Website Disclosures
  4. Donor Privacy
  5. Cause Marketing Disclosures
  6. Complaints

Charcot-Marie-Tooth Association does not meet the following 5 Standards for Charity Accountability:

Standard 6 (Board Policy on Effectiveness)
Have a board policy of assessing, no less than every two years, the organization's performance and effectiveness and of determining future actions required to achieve its mission.

CMTA does not meet this Standard because:

  • The board of directors does not have a written policy stating that, at least every two years, an appraisal be done assessing the organization’s performance and effectiveness and determining future actions required to achieve its mission.

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.

CMTA does not meet this Standard because:

  • It has not completed an effectiveness assessment in the last two years.

Standard 11 (Financial Statements)
Make available to all, on request, complete annual financial statements prepared in accordance with generally accepted accounting principles. When total annual gross income exceeds $1 million, these statements should be audited in accordance with generally accepted auditing standards. For charities whose annual gross income is less than $1 million, a review by a certified public accountant is sufficient to meet this standard. For charities whose annual gross income is less than $250,000, an internally produced, complete financial statement is sufficient to meet this standard.

CMTA does not meet this Standard because:

  • The organization's 2022 audited financial statements were not prepared in accordance with Generally Accepted Accounting Principles (GAAP).

The auditor’s opinion states that, "The financial statements are prepared on the modified cash basis of accounting, which is a basis of accounting other than U.S. generally accepted accounting principles."

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.

CMTA does not meet this Standard because the 2022 annual report did not include:

  • Total end of year net assets.

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.

CMTA does not meet this Standard because the privacy policy on its website, https://www.cmtausa.org/, does not indicate:

  • What security measures are in place to protect personal information that is collected.

The BBB Wise Giving Alliance requested but did not receive complete information from the organization and is unable to verify the organization's compliance with the following Standard(s) for Charity Accountability: 13

Charcot-Marie-Tooth Association meets the remaining 14 Standards for Charity Accountability.

Stated Purpose:
"to support the development of new drugs to treat CMT, to improve the quality of life for people with CMT, and, ultimately, to find a cure."

Year, State Incorporated:
1983, PA

Charcot-Marie-Tooth Association (CMTA) publishes a quarterly newsletter to provide research information to its readers and to provide patients with the knowledge and understanding to deal effectively with the disease. Branches are run by individuals who provide other CMT patients in their general area a means by which they can interact with others dealing with the same problems and listen to specialists who discuss topics such as surgeries, physical therapy, shoe fitting and bracing. Branches are currently located in approximately 15 different areas of the country. Over the years, patient family conferences have been a useful means of introducing patients to medical specialists in their area who treat CMT and are familiar with the disorder. As reported by the organization, CMTA's Camp Footprint is the only camp in the United States just for kids with CMT. It is an annual, free, six-day sleepaway camp for youth (ages 10-18) with CMT. CMTA also reports that Camp Footprint envisions a world where children with CMT are empowered with the courage, hope, skills and community for a lifelong journey of realizing potential and developing strengths.

For the year ended December 31, 2022, Charcot-Marie-Tooth Association's program expenses were:

Research, education, camp, other $6,091,426
Total Program Expenses $6,091,426

Chief Executive
Amy Gray, Chief Executive Officer

Compensation*
$278,772

Chair of the Board
Gilles Bouchard

Chair's Profession / Business Affiliation
Chairman and CEO, Livescribe

Board Size
15

Paid Staff Size
10

*2022 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.

Method(s) Used:
Direct mail appeals, Internet, Direct mail appeals, Radio

Fundraising costs were 3% of related contributions. (Related contributions, which totaled $8,586,178, are donations received as a result of fundraising activities.)

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.

The following information is based on Charcot-Marie-Tooth Association's audited financial statements for the year ended December 31, 2022.

Source of Funds
Investment loss $-5,330
Other revenue $6,216
Support group revenue $342,888
Special events income $404,001
Program service income $1,581,813
Contributions and grants $3,272,897
Bequests $4,909,280
Total Income $10,493,765

Programs: 91% Fundraising: 4% Administrative: 4%

Total Income $10,493,765
Total expenses: $6,661,443
  Program expenses $6,091,426
  Fundraising expenses $299,494
  Administrative expenses $270,523
  Other expenses $0
Income in Excess of Expenses $3,832,322
Beginning Net Assets $6,028,701
Other Changes In Net Assets $0
Ending Net Assets $9,861,023
Total Liabilities $0
Total Assets $9,861,023

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 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 International Association of Better Business Bureaus.

This report is not to be used for fundraising or promotional purposes.

RELATED CONTENT

Report completed by:
BBB Wise Giving Alliance