Program areas at National MPS Society
The Society funded approximately 9 research grants during 2023 for the purpose of finding treatments and cures for MPS and related diseases.
The Society provided information services and educational support for affected families (newsletters, syndrome booklets, fact sheets, website, directory) and increased public awareness of these rare genetic diseases (conferences & advocacy).
The Society provided medical equipment scholarships, funeral expense grants, education scholarships, medical travel & extended hospital stay assistance, and travel to conferences scholarships for the purpose of providing family support for people and their families who are in some way affected by MPS.
Grants made by National MPS Society
Who funds National MPS Society
Grants from foundations and other nonprofits
Personnel at National MPS Society
| Name | Title | Compensation | Date of data |
|---|
| Terri Klein | President and Chief Executive Officer | $130,785 | 2024-05-14 |
| Matthew Ellinwood | Chief Scientific Officer | $162,589 | 2024-05-14 |
| Amy Downen | Director of Development | | 2024-05-14 |
| Carol Bryant | Pathways Program Director | | 2023-10-27 |
| Leslie Urdaneta | Director of Family Support and Communication | | 2024-05-14 |
| ...and 12 more key personnel |
Financials for National MPS Society
| Revenues | FYE 12/2023 | FYE 12/2022 | % Change |
|---|
| Total grants, contributions, etc. | $1,771,031 | $1,450,281 | 22.1% |
| Program services | $451,952 | $332,384 | 36% |
| Investment income and dividends | $124,182 | $139,347 | -10.9% |
| Tax-exempt bond proceeds | $0 | $0 | - |
| Royalty revenue | $0 | $0 | - |
| Net rental income | $0 | $0 | - |
| Net gain from sale of non-inventory assets | $-16,220 | $-108,657 | 85.1% |
| Net income from fundraising events | $-34,286 | $23,831 | -243.9% |
| Net income from gaming activities | $0 | $0 | - |
| Net income from sales of inventory | $0 | $0 | - |
| Miscellaneous revenues | $0 | $0 | - |
| Total revenues | $2,296,659 | $1,837,186 | 25% |
Organizations like National MPS Society
| Organization | Type | Location | Revenue |
|---|
| TSC Alliance | 501(c)(3) | Silver Spring, MD | $10,016,383 |
| Alpha-1 Foundation Alpha One Foundation | 501(c)(3) | Miami, FL | $10,453,299 |
| National Pku Alliance | 501(c)(3) | New York, NY | $1,305,823 |
| Solve Me CFS Initiative | 501(c)(3) | Glendale, CA | $2,037,881 |
| National Center for Learning Disabilities | 501(c)(3) | Washington, DC | $1,255,350 |
| Cure HHT | 501(c)(3) | Monkton, MD | $3,740,865 |
| Foundation for Ichthyosis and Related Skin Types (FIRST) | 501(c)(3) | Lansdale, PA | $734,946 |
| Schizophrenia & Psychosis Acti | 501(c)(3) | Alexandria, VA | $1,546,410 |
| International Dyslexia Association (IDA) | 501(c)(3) | Pikesville, MD | $2,207,902 |
| The International Waldenstrom's Macroglobulinemia Foundation | 501(c)(3) | Sarasota, FL | $3,292,131 |
Data update history
September 26, 2024
Posted financials
Added Form 990 for fiscal year 2023
May 14, 2024
Updated personnel
Identified 7 new personnel
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthEducationDiseases and disorders
Characteristics
Political advocacyConducts researchLobbyingFundraising eventsOperates internationallyNational levelEndowed supportProvides scholarshipsGala fundraisersTax deductible donationsAccepts online donations
General information
- Address
- PO Box 14686
- Durham, NC 27709
- Metro area
- Durham-Chapel Hill, NC
- County
- Durham County, NC
- Website URL
- mpssociety.org/Â
- Phone
- (919) 806-0101
IRS details
- EIN
- 11-2734849
- Fiscal year end
- December
- Taxreturn type
- Form 990
- Year formed
- 1985
- 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
California AB-488 details
- AB 488 status
- May Operate or Solicit for Charitable Purposes
- Charity Registration status
- Current
- FTB status revoked
- Not revoked
- AG Registration Number
- 092098
- FTB Entity ID
- 1696287
- AB 488 data last updated ("as-of") date
- 2024-12-31
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