Program areas at The Wiedemann-Steiner Syndrome Foundation
Expanded outreach through its family volunteers to serve as regional ambassadors and hosted several virtual activities to raise awareness of wss including The monthly expert virtual discussions to educate The wss community, annual wss triathlon (virtually), and international wss awareness day.
Organized and completed a $200,000 grant that was funded in 2020 to create a mouse prototype to advance The research of wss.
Raised awareness and support to initiate medical research on The wss gene by leveraging The existing scientific advisory board and nominated a rare genetic scientist to initiate The Foundation first study of wss.
Began to organize The infrastructure in order to commission a natural history study to support The completed research from accomplishment 3above
Who funds The Wiedemann-Steiner Syndrome Foundation
Grants from foundations and other nonprofits
Personnel at The Wiedemann-Steiner Syndrome Foundation
Name | Title | Compensation | Date of data |
---|
Libby Woolford | President | $0 | 2022-05-31 |
Thor Misko | Secretary | $0 | 2022-12-31 |
Drew Schaefer | Treasurer | $0 | 2022-12-31 |
Diego Mahecha | Treasurer / Board Member | $0 | 2021-12-31 |
Kirsten Stuart Resigned | Secretary | $0 | 2020-12-31 |
Financials for The Wiedemann-Steiner Syndrome Foundation
Revenues | FYE 12/2022 | FYE 12/2021 | % Change |
---|
Total grants, contributions, etc. | $225,335 | $187,098 | 20.4% |
Program services | $0 | $0 | - |
Investment income and dividends | $758 | $78 | 871.8% |
Tax-exempt bond proceeds | $0 | $0 | - |
Royalty revenue | $0 | $0 | - |
Net rental income | $0 | $0 | - |
Net gain from sale of non-inventory assets | $0 | $0 | - |
Net income from fundraising events | $0 | $0 | - |
Net income from gaming activities | $0 | $0 | - |
Net income from sales of inventory | $0 | $0 | - |
Miscellaneous revenues | $1,723 | $769 | 124.1% |
Total revenues | $227,816 | $187,945 | 21.2% |
Organizations like The Wiedemann-Steiner Syndrome Foundation
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VHL Alliance | 501(c)(3) | Boston, MA | $1,073,740 |
Ald Connect | 501(c)(3) | Middleton, MA | $378,350 |
Koolen-de Vries Syndrome Foundation | 501(c)(3) | Wilmington, NC | $237,465 |
Dysautonomia International | 501(c)(3) | East Moriches, NY | $1,133,539 |
Lupus Foundation of America DC / MD / VA Chapter | 501(c)(3) | Washington, DC | $761,790 |
Charge Syndrome Foundation | 501(c)(3) | Buffalo Grove, IL | $502,106 |
Bobby Jones Chiari and Syringomyelia Foundation | 501(c)(3) | Staten Island, NY | $769,207 |
Rothmund-Thomson Syndrome Foundation | 501(c)(3) | Chantilly, VA | $77,171 |
Noonan Syndrome Foundation | 501(c)(3) | Blue Springs, MO | $93,656 |
Gastroparesis Patient Association G-Pact | 501(c)(3) | Etters, PA | $80,516 |
Data update history
October 1, 2023
Posted financials
Added Form 990 for fiscal year 2022
July 1, 2023
Posted financials
Added Form 990 for fiscal year 2021
June 27, 2023
Posted financials
Added Form 990 for fiscal year 2020
June 27, 2023
Updated personnel
Identified 4 new personnel
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Conducts researchFundraising eventsOperates internationallyNational levelCommunity engagement / volunteeringTax deductible donationsNo full-time employees
General information
- Address
- 1314 44th St
- Sacramento, CA 95819
- Metro area
- Sacramento-Roseville-Folsom, CA
- County
- Sacramento County, CA
- Website URL
- wssfoundation.org/Â
- Phone
- (916) 502-2120
IRS details
- EIN
- 81-1260031
- Fiscal year end
- December
- Taxreturn type
- Form 990
- Year formed
- 2016
- Eligible to receive tax-deductible contributions (Pub 78)
- Yes
Categorization
- NTEE code, primary
- G80: Specifically Named Diseases
- NAICS code, primary
- 813212: Health and Disease Research Fundraising Organizations
- Parent/child status
- Independent
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