Program areas at National Niemann-Pick Disease Foundation
Family support - support services to families who have a family member diagnosed with Niemann-Pick Disease and patient advocacy efforts. Patient advocacy for access to medications and experimental therapies. Emotional support to individuals and families dealing with all types of Niemann-Pick Disease, assistance through crises, information and ideas about issues such as doctors, clinics, insurance companies and other health and human service programs and practical suggestions about day-to-day care. Communications including monthly newsletters, e-news, and social media news updates. The annual nnpdf family support and medical conference brings together families, scientists, and medical professionals to share information and provide support.
Research support - nnpdf supports over 450 diagnosed families at all stages of their Niemann-Pick Disease journey. We provide accurate up-to-date information on the latest advances in medicine and science related to Niemann-Pick Disease. Provision and monitoring of scientific research grants and fellowships to research scientists.
Who funds National Niemann-Pick Disease Foundation
Grants from foundations and other nonprofits
Personnel at National Niemann-Pick Disease Foundation
| Name | Title | Compensation | Date of data |
|---|
| Joslyn Crowe | Executive Director | $128,530 | 2022-12-31 |
| Laurie Turner | Family Services Manager | | 2022-02-24 |
| Becky McGuire | Chair | $0 | 2023-06-15 |
| Mike Smith | Treasurer | $0 | 2022-12-31 |
| Meghann Ferguson | Secretary | $0 | 2022-12-31 |
| ...and 9 more key personnel |
Financials for National Niemann-Pick Disease Foundation
| Revenues | FYE 12/2022 | FYE 12/2021 | % Change |
|---|
| Total grants, contributions, etc. | $526,689 | $490,047 | 7.5% |
| Program services | $24,017 | $3,400 | 606.4% |
| Investment income and dividends | $1,551 | $328 | 372.9% |
| 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 | $4,414 | $5,454 | -19.1% |
| Total revenues | $556,671 | $499,229 | 11.5% |
Organizations like National Niemann-Pick Disease Foundation
| Organization | Type | Location | Revenue |
|---|
| Osteogenesis Imperfecta Foundation | 501(c)(3) | Gaithersburg, MD | $2,214,512 |
| Foundation for Sarcoidosis Research (FSR) | 501(c)(3) | Chicago, IL | $1,673,599 |
| Gateway Hemophilia Association | 501(c)(3) | Saint Louis, MO | $374,624 |
| National Foundation for Ectodermal Dysplasias | 501(c)(3) | Fairview Heights, IL | $1,161,405 |
| Lone Star Bleeding Disorders Foundation | 501(c)(3) | Houston, TX | $663,733 |
| Great Lakes Hemophilia Foundation | 501(c)(3) | Milwaukee, WI | $1,557,533 |
| Hemophilia Foundation of Southern California (HFSC) | 501(c)(3) | Pasadena, CA | $1,225,164 |
| Spina Bifida Association of Greater New England | 501(c)(3) | Natick, MA | $261,683 |
| Hemophilia Association of the Capital Area | 501(c)(3) | Springfield, VA | $292,950 |
| Bonnell Foundation Living with Cystic Fibrosis | 501(c)(3) | Royal Oak, MI | $205,376 |
Data update history
November 25, 2023
Posted financials
Added Form 990 for fiscal year 2021
August 3, 2023
Posted financials
Added Form 990 for fiscal year 2022
July 27, 2023
Updated personnel
Identified 3 new personnel
July 1, 2023
Posted financials
Added Form 990 for fiscal year 2020
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
Political advocacyConducts researchOperates internationallyProvides scholarshipsTax deductible donationsAccepts online donations
General information
- Address
- PO Box 49
- Fort Atkinson, WI 53538
- Metro area
- Janesville-Beloit, WI
- County
- Jefferson County, WI
- Website URL
- nnpdf.org/Â
- Phone
- (877) 287-3672
IRS details
- EIN
- 35-1844264
- Fiscal year end
- December
- Taxreturn type
- Form 990
- Year formed
- 1992
- 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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