FSHD Society
Meets Standards

Standards For Charity Accountability
Governance
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Board Oversight
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Board Size
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Board Meetings
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Board Compensation
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Conflict of Interest
Measuring Effectiveness
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Effectiveness Policy
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Effectiveness Report
Finances
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Program Expenses
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Fundraising Expenses
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Accumulating Funds
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Audit Report
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Detailed Expense Breakdown
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Accurate Expense Reporting
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Budget Plan
Fundraising & Info
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Truthful Materials
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Annual Report
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Website Disclosures
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Donor Privacy
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Cause Marketing Disclosures
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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).
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