Give.org logo
Support Give.org
Support Give.org
CHARITY REVIEW
Issued: August 2026 Expires: August 2028

FSHD Society

Accredited Charity
Accredited Charity

Meets Standards
(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 families."

Year, State Incorporated:
1991, DC

Formerly Known As:
Facioscapulohumeral (FSH) Society

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

For the year ended December 31, 2024, FSHD Society's program expenses were:

Research and patient programs $4,594,470
Total Program Expenses $4,594,470

Chief Executive
Mark Stone, President and Chief Executive Officer

Compensation*
$243,665

Chair of the Board
James A. Chin, Sr.

Chair's Profession / Business Affiliation
Retired Investment Broker, UBS Financial Services

Board Size
14

Paid Staff Size
17

*2024 compensation includes annual salary and, if applicable, benefit plans, expense accounts, and other allowances.

Method(s) Used:
Direct mail appeals, Invitations to fund raising events, Grant proposals, Internet, Planned giving arrangements, Workplace Giving

Fundraising costs were 13% of related contributions. (Related contributions, which totaled $5,017,198, 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, 2024.

Source of Funds
Contributions and grants $3,104,999
Special events, net $918,733
Donated intellectual property $676,250
Investment return, net $339,205
In-kind contributions $317,216
Program revenue $120,198
Total Income $5,476,601

Programs: 79% Fundraising: 11% Administrative: 10%

Total Income $5,476,601
Total expenses: $5,792,492
  Program expenses $4,594,470
  Fundraising expenses $629,872
  Administrative expenses $568,150
  Other expenses $0
Income in Excess of Expenses $-315,891
Beginning Net Assets $5,014,683
Other Changes In Net Assets $0
Ending Net Assets $4,698,792
Total Liabilities $893,399
Total Assets $5,592,191

Note: According to the organization's 2024 audited financial statements, FSHD Society received in-kind contributions totaling $993,466 in the form of donated intellectual property ($676,250), scientific committees expenses ($150,143), public awareness ($87,823), science time for FSHD Connect and patient education ($75,650), and investment advisory services ($3,600).

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