Program areas at FSHD Society
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.
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, providing high-quality educational materials, organizing educational meetings and conferences, and creating opportunities and support for advocacy and raising public awareness.
Grants made by FSHD Society
Who funds FSHD Society
Grants from foundations and other nonprofits
Personnel at FSHD Society
| Name | Title | Compensation | Date of data |
|---|
| Mark Stone | Chief Executive Officer | $170,858 | 2024-12-18 |
| Ken Kahtava | Chief Operating Officer | | 2024-12-18 |
| Agnes Mestrich | Chief Financial Officer | | 2024-12-18 |
| Carolyn Lloyd | Chief Development Officer | | 2024-12-18 |
| Kenneth Alexander Kahtava | Chief Business Officer | $144,706 | 2023-12-31 |
| ...and 8 more key personnel |
Financials for FSHD Society
| Revenues | FYE 12/2023 | FYE 12/2022 | % Change |
|---|
| Total grants, contributions, etc. | $4,106,175 | $2,930,776 | 40.1% |
| Program services | $157,597 | $304,466 | -48.2% |
| Investment income and dividends | $154,284 | $98,205 | 57.1% |
| Tax-exempt bond proceeds | $0 | $0 | - |
| Royalty revenue | $0 | $0 | - |
| Net rental income | $0 | $0 | - |
| Net gain from sale of non-inventory assets | $-5,266 | $35,699 | -114.8% |
| Net income from fundraising events | $39,986 | $0 | 999% |
| Net income from gaming activities | $0 | $0 | - |
| Net income from sales of inventory | $0 | $0 | - |
| Miscellaneous revenues | $2,638 | $139,774 | -98.1% |
| Total revenues | $4,455,414 | $3,508,920 | 27% |
Organizations like FSHD Society
| Organization | Type | Location | Revenue |
|---|
| The Cure Starts Now | 501(c)(3) | Cincinnati, OH | $5,080,693 |
| Epilepsy Foundation | 501(c)(3) | Bowie, MD | $17,841,214 |
| Cure Sma (CSMA) | 501(c)(3) | Elk Grove Village, IL | $14,785,235 |
| National Scleroderma Foundation | 501(c)(3) | Danvers, MA | $4,941,722 |
| Tourette Association of America | 501(c)(3) | Bayside, NY | $5,048,195 |
| Uplifting Athletes | 501(c)(3) | Doylestown, PA | $1,572,398 |
| Myasthenia Gravis Foundation of America (MGFA) | 501(c)(3) | Westborough, MA | $3,555,325 |
| CURE Epilepsy (CURE) | 501(c)(3) | Chicago, IL | $6,183,163 |
| Davis Phinney Foundation | 501(c)(3) | Louisville, CO | $3,779,269 |
| Jett Foundation | 501(c)(3) | Plymouth, MA | $3,537,013 |
Data update history
December 18, 2024
Updated personnel
Identified 6 new personnel
November 25, 2024
Updated personnel
Identified 6 new personnel
September 1, 2024
Posted financials
Added Form 990 for fiscal year 2023
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsHeadquarter / parent organizationsCharities
Issues
Science and technologyHealthDiseases and disorders
Characteristics
Political advocacyOperates donor advised fundsConducts researchFundraising eventsGrassroots organizingOperates internationallyNational levelCommunity engagement / volunteeringTax deductible donationsAccepts online donations
General information
- Address
- 75 N Main St 1073
- Randolph, MA 02368
- Metro area
- Boston-Cambridge-Newton, MA-NH
- County
- Norfolk County, MA
- Website URL
- fshdsociety.org/Â
- Phone
- (781) 301-6060
IRS details
- EIN
- 52-1762747
- Fiscal year end
- December
- Taxreturn type
- Form 990
- Year formed
- 1991
- Eligible to receive tax-deductible contributions (Pub 78)
- Yes
Categorization
- NTEE code, primary
- G50: Nerve, Muscle, and Bone Diseases
- NAICS code, primary
- 813212: Health and Disease Research Fundraising Organizations
- Parent/child status
- Independent
California AB-488 details
- AB 488 status
- May Not Operate or Solicit for Charitable Purposes
- Charity Registration status
- Delinquent
- FTB status revoked
- Not revoked
- AG Registration Number
- CT0204680
- FTB Entity ID
- 3666474
- AB 488 data last updated ("as-of") date
- 2025-03-19
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