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CHARITY REVIEW
Issued: February 2024 Expires: February 2026

FSHD Society

Accredited Charity
Accredited Charity

Meets Standards
Accreditation seal
(781) 301-6060
75 North Main Street, Suite 1073
Randolph, MA, 02368
https://FSHDSociety.org
📄 Full Report 🖨️ Print 📋 BBB Charity Standards

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

FSHD Society meets the 20 Standards for Charity Accountability.

Stated Purpose:
"to find treatments and a cure for FSHD while empowering our families."

Year, State Incorporated:
1991, DC

Also Known As:
Facioscapulohumeral (FSH) Society

The FSHD Society seeks to accelerate research to expedite treatments and a cure for FSH Muscular Dystrophy (FSHD). The organization also seeks to enlarge, engage, and empower an active global community. The FSHD Society reports that its patient advocacy and education programs directly benefit patients and their families by connecting FSH Muscular Dystrophy patients and families to healthcare providers, research institutions, and support groups, providing educational materials, organizing educational meetings and conferences, and creating opportunities and support for advocacy and public awareness.

For the year ended December 31, 2022, FSHD Society's program expenses were:

Research and patient programs $4,307,236
Total Program Expenses $4,307,236

Chief Executive
Mark A. Stone, President and Chief Executive Officer

Compensation*
$272,924

Chair of the Board
James A. Chin, Sr.

Chair's Profession / Business Affiliation
Retired

Board Size
16

Paid Staff Size
16

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

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

Fundraising costs were 13% of related contributions. (Related contributions, which totaled $3,313,567, 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 FSHD Society's audited financial statements for the year ended December 31, 2022.

Source of Funds
Investment return, net $-335,465
Other income $500
Return of grant funds $139,274
Program revenue $304,466
In-kind contributions $382,791
Special event revenue, net $739,414
Gifts, grants and contributions $2,191,362
Total Income $3,422,342

Programs: 85% Fundraising: 8% Administrative: 7%

Total Income $3,422,342
Total expenses: $5,096,135
  Program expenses $4,307,236
  Fundraising expenses $429,078
  Administrative expenses $359,821
  Other expenses $0
Income in Excess of Expenses $-1,673,793
Beginning Net Assets $6,352,410
Other Changes In Net Assets $0
Ending Net Assets $4,678,617
Total Liabilities $1,400,698
Total Assets $6,079,315

Note: According to FSHD Society's 2022 audited financial statements, the organization received in-kind contributions totaling $382,791 in the form of scientific committee expenses ($212,075), public awareness ($106,591), science time for FSHD Connect and patient education ($59,925), and investment advisory services ($4,200).

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