Is it real?
Yes. Never revoked by the IRS. Latest filing on record: FY2024. IRS ruling in Feb 1992.
IRS Pub. 78 · IRS Auto-Revocation List · IRS Business Master File
Where the money goes
78 cents of each dollar spent went to programs.
Form 990 Part IX, line 25, columns B–D. Every line is in By the numbers.
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Who runs it and what they're paid
26 people listed on the 990; $1.1M paid to officers and key staff.
Mark Stone’s $227K as CEO & President is at the 68th percentile of top reported officer pay among 360 $1–10M medical research nonprofits. Peer set: organizations in the same NTEE major field of work and revenue-size band, compared on each org’s own highest-paid officer/key-employee, from Form 990 Part VII / 990-PF Part VIII. Descriptive placement, not a verdict on whether the pay is appropriate.
Compensation history total reportable pay by year · 8 named individuals · Part VII
| Name | FY2024 | FY2023 | FY2022 | FY2021 | FY2020 |
|---|---|---|---|---|---|
| Jamshid Arjomand | — | $263,780 | $197,520 | $190,401 | $188,883 |
| Mark Stone | $226,757 | $170,858 | $223,921 | $199,683 | $206,719 |
| Kenneth Alexander Kahtava | $190,956 | $144,706 | $108,907 | — | — |
| Agnes M Mestrich | $168,829 | — | — | — | — |
| Beth Johnston | $151,086 | $134,896 | $122,500 | $116,000 | $117,550 |
| Carolyn Lloyd | $145,482 | — | — | — | — |
| Lisa Schimmel | — | $126,407 | $116,490 | $106,139 | $111,991 |
| Amanda Hill | $120,469 | $107,959 | — | — | — |
Total reportable compensation (Form 990 Part VII column D / Schedule J column E) by filing year, matched by name within this organization. The Schedule J base / bonus / deferred breakdown is not parsed into this dataset.
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Questions the 990 asks
The form asks each of these directly. These are the filed answers.
- Family or business ties among officersPt VI · Ln 2Yes
- Top official's pay set by an independent reviewPt VI · Ln 15aYes
Programs and updates
Fund research and support families affected by FSHD to find treatments and a cure.
Questions for Fshd Society
Your first name shows with your question. Fshd Society answers here, for everyone.
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Patient advocacy and educationthe society seeks to enlarge, engage, & empower an active global community. The FSHD society's patient advocacy and education programs directly benefit patients and their families by connecting FSHD muscular dystrophy patients and families to healthcare providers, research institutions, and support groups…
Research the society seeks to accelerate research to expedite treatments and a cure for FSHD muscular dystrophy. Organizing and funding research into the causes of FSHD, and, ultimately developing treatments and a cure, is the society's core mission.
Funders
Who pays for it.
From grant filings on record. Receipts are incomplete: individual donors are never listed.
Grants
By the numbers
The FY2024 990, line by line.
Download 990
| Line | Start FY24 | End FY24 |
|---|---|---|
| Cash and savingsLn 1–2 | $3.6M | $1.1M |
| InvestmentsLn 11–13 | $2.2M | $2.5M |
| Total assetsLn 16 | $6.4M | $5.6M |
| LiabilitiesLn 26 | $1.4M | $893K |
| Net assetsLn 32 | $5.0M | $4.7M |
| Line | Total | Programs | Management | Fundraising |
|---|---|---|---|---|
| Grants to domestic organizationsLn 1 | $8K | $8K | ||
| Grants to domestic individualsLn 2 | $132K | $132K | ||
| Grants and assistance to foreign recipientsLn 3 | $138K | $138K | ||
| Pay of current officers, directors and key staffLn 5 | $677K | $399K | $228K | $49K |
| Other salaries and wagesLn 7 | $1.6M | $1.1M | $144K | $284K |
| Pension plan contributionsLn 8 | $41K | $30K | $3K | $8K |
| Other employee benefitsLn 9 | $231K | $163K | $27K | $41K |
| Payroll taxesLn 10 | $183K | $124K | $31K | $28K |
| Legal feesLn 11b | $107K | $98K | $8K | $704 |
| Accounting feesLn 11c | $23K | $23K | ||
| Other fees for servicesLn 11g | $841K | $828K | $8K | $5K |
| Office expensesLn 13 | $39K | $23K | $10K | $6K |
| Information technologyLn 14 | $302K | $251K | $26K | $25K |
| TravelLn 17 | $408K | $358K | $10K | $39K |
| Conferences, conventions and meetingsLn 19 | $386K | $385K | $684 | |
| Depreciation, depletion and amortizationLn 22 | $36K | $36K | ||
| InsuranceLn 23 | $15K | $3K | $12K | |
| Other expenses (24a–d)Ln 24 | $320K | $160K | $18K | $142K |
| All other expensesLn 24e | $20K | $3K | $16K | $37 |
| Total functional expensesLn 25 | $5.5M | $4.3M | $565K | $630K |
Filing history
| Year | Money in | Money out | In minus out | Net assets | Download |
|---|---|---|---|---|---|
| FY2024 Latest Viewing | $4.9M | $5.5M | −$533K | $4.7M | 990 PDF |
| FY2023 | $4.5M | $4.3M | $144K | $5.0M | 990 PDF |
| FY2022 | $3.5M | $4.7M | −$1.2M | $4.7M | 990 PDF |
| FY2021 | $5.5M | $4.6M | $873K | $6.4M | 990 PDF |
| FY2020 | $2.6M | $2.9M | −$238K | $5.5M | 990 PDF |
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Schedules filed Part IV
See the full FY2024 990 (6 parts)
Part I · Summary $4,942,571 revenue, 12 lines filed
Part VI · Governance 17 of 17 board members independent, 1 to look at
Part VIII · Statement of revenue $4,942,571 across 8 lines filed
Part IX · Statement of functional expenses $5,475,276 across 19 lines filed
Part X · Balance sheet $5,592,191 assets, 18 lines filed
Part XI · Reconciliation of net assets $4,698,792 net assets at year end
Form 990 e-file (XML) FY2024 from the IRS · Classification, formation year and address from the IRS Business Master File
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