Program areas at Smith-Lemli-Opitz Foundation
Originally, the Smith-Lemli-Opitz/RSH Foundation was created in 1988 to give a group of 37 families with SLO children a network to exchange experiences and information about Smith-Lemli-Opitz Syndrome. Since then, the group has grown to more than 500 families in the United States and across the world.The SLO/RSH Foundation's website (www.smithlemliopitz.org) is often a parent's first point of contact after their child has been newly diagnosed with the Smith-Lemli-Opitz Syndrome. On the website, families will find a syndrome overview and related research articles, information about ongoing research studies, and an invitation for families to join our special support community. The Foundation, in conjunction with volunteers, has set up e-mail and social media groups such as Facebook, Twitter and our SLO Yahoo Group so that families can contact each other informally. This medium provides immediate support for families to ask questions, share in joyful times and share in grief or frustration.Additionally, the Foundation provides semi-annual newsletters and helps to sponsor regular national conferences where physicians, scientists, and parents can learn more about the syndrome and from each other.Another important goal of the Foundation, which is run solely by volunteers, is to raise and provide funds to promote research into treatments and ultimately a cure for Smith-Lemli-Opitz Syndrome.
Grants made by Smith-Lemli-Opitz Foundation
Who funds Smith-Lemli-Opitz Foundation
Grants from foundations and other nonprofits
Personnel at Smith-Lemli-Opitz Foundation
Name | Title | Compensation | Date of data |
---|
Gretchen Noah | President | $8,000 | 2023-06-05 |
Kelly Noah | Secretary | $0 | 2022-12-31 |
Amanda Black | Vice President | $0 | 2016-12-31 |
Melissa Gallagher | Secretary | $0 | 2013-12-31 |
Financials for Smith-Lemli-Opitz Foundation
Revenues | FYE 12/2022 | FYE 12/2021 | % Change |
---|
Total grants, contributions, etc. | $59,374 | $62,150 | -4.5% |
Program services | $0 | $0 | - |
Membership dues | $0 | $0 | - |
Investment income and dividends | $0 | $0 | - |
Net gain from sale of non-inventory assets | $0 | $0 | - |
Net income from gaming activities and fundraising events, combined | $0 | $0 | - |
Net income from sales of inventory | $0 | $0 | - |
Miscellaneous revenues | $0 | $0 | - |
Total revenues | $59,374 | $62,150 | -4.5% |
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Data update history
November 25, 2023
Posted financials
Added Form 990EZ for fiscal year 2021
August 8, 2023
Posted financials
Added Form 990EZ for fiscal year 2020
August 2, 2023
Posted financials
Added Form 990EZ for fiscal year 2022
June 8, 2023
Updated personnel
Identified 1 new personnel
Nonprofit Types
Grantmaking organizationsDisease research fundraisersDisease-focused nonprofitsCharities
Issues
HealthDiseases and disorders
Characteristics
MembershipsConducts researchNational levelTax deductible donationsNo full-time employeesAccepts online donations
General information
- Address
- PO Box 10598
- Fargo, ND 58106
- Metro area
- Fargo, ND-MN
- County
- Cass County, ND
- Website URL
- smithlemliopitz.org/
- Phone
- (701) 367-1976
IRS details
- EIN
- 23-2635206
- Fiscal year end
- December
- Taxreturn type
- Form 990-EZ
- Year formed
- 1990
- 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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