Program areas at Utah Prader-Willi Syndrome Association
Assisted living for individuals and families - Special needs camp, dance, support for medical, legal and respite needs, personal computing devices, Christmas and Summer activities
Training and education - Host training conference for families, participate with PWSA (national association), produce training resources for families
Awareness events - Sponsored and participated in awareness and fundraising events to raise awareness of the syndrome and facilitate early diagnosis and interventions
Who funds Utah Prader-Willi Syndrome Association
Grants from foundations and other nonprofits
Personnel at Utah Prader-Willi Syndrome Association
| Name | Title | Compensation | Date of data |
|---|
| Lisa Thornton | President | $0 | 2023-11-16 |
| Duff Gardner | Treasurer | $0 | 2022-12-31 |
| Caryn Hunt | Vice President | $0 | 2022-12-31 |
| Ellie Saltern | Secretary | $0 | 2022-12-31 |
Financials for Utah Prader-Willi Syndrome Association
| Revenues | FYE 12/2022 | FYE 12/2021 | % Change |
|---|
| Total grants, contributions, etc. | $313,225 | $257,696 | 21.5% |
| Program services | $0 | $0 | - |
| Investment income and dividends | $8,695 | $30 | 28883.3% |
| 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 | $0 | $0 | - |
| Total revenues | $321,920 | $257,726 | 24.9% |
Organizations like Utah Prader-Willi Syndrome Association
| Organization | Type | Location | Revenue |
|---|
| Down Syndrome Association of Northwest Indiana | 501(c)(3) | Schererville, IN | $163,111 |
| Colorado Springs Down Syndrome Association | 501(c)(3) | Colorado Springs, CO | $92,928 |
| Cure Cystic Fibrosis Miami Foundation | 501(c)(3) | Miami, FL | $93,432 |
| Massachusetts Sickle Cell Associationinc | 501(c)(3) | Boston, MA | $120,178 |
| Ameriface | 501(c)(3) | Las Vegas, NV | $102,174 |
| Hemophilia Foundation of Arkansas | 501(c)(3) | Little Rock, AR | $126,300 |
| Support Organization for Trisomy 1813 - Soft | 501(c)(3) | Rochester, NY | $148,862 |
| Huntington's Disease Youth Organization of America | 501(c)(3) | Livonia, MI | $220,565 |
| Down Syndrome Association of Miami | 501(c)(3) | Miami, FL | $109,265 |
| Panhandle Down Syndrome Guild | 501(c)(3) | Amarillo, TX | $86,271 |
Data update history
December 29, 2023
Posted financials
Added Form 990 for fiscal year 2022
December 29, 2023
Updated personnel
Identified 2 new personnel
November 25, 2023
Posted financials
Added Form 990 for fiscal year 2021
June 27, 2023
Posted financials
Added Form 990EZ for fiscal year 2020
February 24, 2022
Posted financials
Added Form 990EZ for fiscal year 2019
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Conducts researchPartially liquidatedState / local levelTax deductible donationsNo full-time employees
General information
- Address
- 2652 E Nottingham Way
- Salt Lake City, UT 84108
- Metro area
- Salt Lake City, UT
- County
- Salt Lake County, UT
- Website URL
- upwsa.org/Â
IRS details
- EIN
- 87-0468350
- Fiscal year end
- December
- Taxreturn type
- Form 990
- Year formed
- 1988
- Eligible to receive tax-deductible contributions (Pub 78)
- Yes
Categorization
- NTEE code, primary
- G20: Birth Defects and Genetic Diseases
- NAICS code, primary
- 813212: Health and Disease Research Fundraising Organizations
- Parent/child status
- Independent
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