Program areas at PWSA
Family support: pwsa/usa's family support team provides individuals diagnosed with Prader-Willi Syndrome, their families, and care providers with critical information and resources on pws. We also provide education to medical providers, schools, and professional care givers through ongoing training, toolkits and other valuable resources. We support the family from nicu through all stages of the pws journey. In 2022, pwsa's family support team responded to 3,447 family support inquiries providing support to families in all 50 u.s. states and more than 20 different countries, trained 10 schools and 9 provider agencies, and hosted a virtual sleep summit and a health care advocacy webinar series reaching over 700 registrants for each event.
Research: pwsa/usa seeks to support research projects with the potential for immediate and high impact for the pws community. The goal is to fast-track better treatment for the Syndrome, and we proudly collaborate with partners representing pharmaceutical companies, research universities, and more to achieve that goal. In 2022, pwsa paid out research grants totaling $119,812 and received the findings from 3 of our grant funded projects.
Advocacy and awareness: increasing awareness and effectively advocating for Prader-Willi Syndrome at the state and federal level is a critical component of our mission. We seek to involve all members of our community and work to keep you informed on the best ways to affect change for our loved ones. In 2022, pwsa conducted a dc fly-in for 51 advocates representing 21 states who attended a combined 76 congressional meetings and hosted 11 advocacy in action webinars for our community.
Who funds Prader-Willi Syndrome Association | USA (PWSA)
Grants from foundations and other nonprofits
Personnel at PWSA
Name | Title | Compensation | Date of data |
---|
Stacy Ward | Chief Executive Officer | | 2023-11-01 |
Paige Rivard | Chief Executive Officer / Executive Director | $151,463 | 2022-12-31 |
Marguerite Rupnow | Chair / Director / Board Member | $0 | 2022-12-31 |
Julie Doherty | Chair / Secretary | $0 | 2022-12-31 |
Pam Zambrotta | Treasurer | $0 | 2022-12-31 |
...and 6 more key personnel |
Financials for PWSA
Revenues | FYE 12/2022 | FYE 12/2021 | % Change |
---|
Total grants, contributions, etc. | $2,117,419 | $1,456,656 | 45.4% |
Program services | $23,978 | $248,038 | -90.3% |
Investment income and dividends | $94,156 | $26,755 | 251.9% |
Tax-exempt bond proceeds | $0 | $0 | - |
Royalty revenue | $0 | $0 | - |
Net rental income | $0 | $0 | - |
Net gain from sale of non-inventory assets | $6,455 | $7,870 | -18% |
Net income from fundraising events | $0 | $-24,774 | -100% |
Net income from gaming activities | $0 | $0 | - |
Net income from sales of inventory | $312 | $4,700 | -93.4% |
Miscellaneous revenues | $0 | $0 | - |
Total revenues | $2,242,320 | $1,719,245 | 30.4% |
Organizations like PWSA
Organization | Type | Location | Revenue |
---|
TSC Alliance | 501(c)(3) | Silver Spring, MD | $10,016,383 |
Lupus Foundation of America Philadelphia Tri-State Chapter | 501(c)(3) | King of Prussia, PA | $715,394 |
National Pku Alliance | 501(c)(3) | New York, NY | $1,305,823 |
Beyond Type 1 | 501(c)(3) | San Mateo, CA | $4,467,079 |
Malaria No More Fund | 501(c)(3) | Seattle, WA | $10,455,988 |
The National Fragile X Foundation | 501(c)(3) | Washington, DC | $3,240,795 |
International Dyslexia Association (IDA) | 501(c)(3) | Pikesville, MD | $2,197,837 |
Solve Me CFS Initiative | 501(c)(3) | Glendale, CA | $2,037,881 |
United Mitochondrial Disease Foundation (UMDF) | 501(c)(3) | Pittsburgh, PA | $5,296,793 |
National Center for Learning Disabilities | 501(c)(3) | Washington, DC | $3,388,247 |
Data update history
January 10, 2024
Posted financials
Added Form 990 for fiscal year 2022
January 9, 2024
Updated personnel
Identified 2 new personnel
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsHeadquarter / parent organizationsCharities
Issues
HealthDiseases and disorders
Characteristics
Political advocacyConducts researchLobbyingFundraising eventsEndowed supportTax deductible donationsAccepts online donations
General information
- Address
- 1032 E Brandon Blvd 4744
- Brandon, FL 33511
- Metro area
- Tampa-St. Petersburg-Clearwater, FL
- County
- Hillsborough County, FL
- Website URL
- pwsausa.org/Â
- Phone
- (800) 926-4797
- Facebook page
- PWSAUSAÂ
- Twitter profile
- @pwsausaÂ
IRS details
- EIN
- 41-1306908
- Fiscal year end
- December
- Taxreturn type
- Form 990
- Year formed
- 1977
- 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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