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 A. Stone | Board Member | $223,921 | 2023-05-05 |
Lisa C. Schimmel | Chief Financial Officer | $116,490 | 2023-05-05 |
Kenneth Alexander Kahtava | Chief Business Officer | $108,907 | 2022-12-31 |
Beth Johnston | Board Member | $122,500 | 2023-05-05 |
Jamshid Arjomand, PhD | Chief Science Officer | $197,520 | 2023-05-05 |
...and 8 more key personnel |
Financials for FSHD Society
Revenues | FYE 12/2022 | FYE 12/2021 | % Change |
---|
Total grants, contributions, etc. | $2,930,776 | $4,546,323 | -35.5% |
Program services | $304,466 | $172,014 | 77% |
Investment income and dividends | $98,205 | $122,027 | -19.5% |
Tax-exempt bond proceeds | $0 | $0 | - |
Royalty revenue | $0 | $0 | - |
Net rental income | $0 | $0 | - |
Net gain from sale of non-inventory assets | $35,699 | $299,156 | -88.1% |
Net income from fundraising events | $0 | $0 | - |
Net income from gaming activities | $0 | $0 | - |
Net income from sales of inventory | $0 | $0 | - |
Miscellaneous revenues | $139,774 | $348,700 | -59.9% |
Total revenues | $3,508,920 | $5,488,220 | -36.1% |
Organizations like FSHD Society
Organization | Type | Location | Revenue |
---|
Cure Sma (CSMA) | 501(c)(3) | Elk Grove Village, IL | $13,668,775 |
Tourette Association of America | 501(c)(3) | Bayside, NY | $4,883,886 |
Parent Project Muscular Dystrophy (PPMD) | 501(c)(3) | Washington, DC | $10,753,014 |
Uplifting Athletes | 501(c)(3) | Doylestown, PA | $1,116,184 |
Myasthenia Gravis Foundation of America (MGFA) | 501(c)(3) | Westborough, MA | $4,388,529 |
CURE Epilepsy (CURE) | 501(c)(3) | Chicago, IL | $6,231,376 |
Davis Phinney Foundation | 501(c)(3) | Louisville, CO | $2,944,853 |
Arthritis Foundation Upper Midwest Region | 501(c)(3) | St Paul, MN | $2,891,319 |
National Ataxia Foundation Incorporated | 501(c)(3) | Minneapolis, MN | $4,581,188 |
National Scleroderma Foundation | 501(c)(3) | Danvers, MA | $4,581,467 |
Data update history
June 22, 2023
Posted financials
Added Form 990 for fiscal year 2021
June 16, 2023
Posted financials
Added Form 990 for fiscal year 2022
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 donations
General information
- Address
- 75 North Main St 1073
- Randolph, MA 02368
- Metro area
- Boston-Cambridge-Newton, MA-NH
- 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
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