EIN 23-2635206

Smith-Lemli-Opitz Foundation

IRS 501(c) type
501(c)(3)
Num. employees
0
City
Year formed
1990
Most recent tax filings
2022-12-01
Description
The Smith-Lemli-Opitz Foundation provides support services to families affected by Slo Syndrome through its primary exempt purpose of raising funds to provide research grants for the study of Smith-Lemli-Opitz Syndrome and providing information to families. Originally created in 1988 with a group of 37 families with SLO children to exchange experiences and information, the foundation has now grown to more than 500 families. The foundation is located in Fargo, ND.
Also known as...
Smith-Lemli-Opitzrsh Foundation
Total revenues
$59,374
2022
Total expenses
$48,481
2022
Total assets
$166,804
2022
Num. employees
0
2017

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

GranteeGrant descriptionAmount
Washington State UniversityTravel Costs of Research Study Participants$22,857

Who funds Smith-Lemli-Opitz Foundation

Grants from foundations and other nonprofits
GrantmakerDescriptionAmount
Network for GoodUnrestricted$19,172
Elmer and Kaya Berg Foundation No 2Funds Research for RSH Syndrome$2,100
AmazonSmile FoundationGeneral Support$1,233
...and 1 more grant received

Personnel at Smith-Lemli-Opitz Foundation

NameTitleCompensation
Gretchen NoahPresident$8,000
Kelly NoahSecretary$0
Amanda BlackVice President$0
Melissa GallagherSecretary$0

Financials for Smith-Lemli-Opitz Foundation

RevenuesFYE 12/2022
Total grants, contributions, etc.$59,374
Program services$0
Membership dues$0
Investment income and dividends$0
Net gain from sale of non-inventory assets$0
Net income from gaming activities and fundraising events, combined$0
Net income from sales of inventory$0
Miscellaneous revenues$0
Total revenues$59,374

Form 990s for Smith-Lemli-Opitz Foundation

Fiscal year endingDate received by IRSFormPDF link
2022-122023-06-05990EZView PDF
2021-122022-10-13990EZView PDF
2020-122021-05-13990EZView PDF
2019-122021-04-27990EZView PDF
2018-122019-10-30990EZView PDF
...and 8 more Form 990s
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 26, 2023
Received grants
Identified 2 new grant, including a grant for $2,100 from Elmer and Kaya Berg Foundation No 2
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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