Wiedemann-Steiner Syndrome Foundation

Organization Overview

Wiedemann-Steiner Syndrome Foundation is located in Sacramento, CA. The organization was established in 2016. According to its NTEE Classification (G11) the organization is classified as: Single Organization Support, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Wiedemann-Steiner Syndrome Foundation is a 501(c)(3) and as such, is described as a "Charitable or Religous organization or a private foundation" by the IRS.

For the year ending 12/2021, Wiedemann-Steiner Syndrome Foundation generated $187.9k in total revenue. The organization has seen a slow decline revenue. Over the past 4 years, revenues have fallen by an average of (2.2%) each year. All expenses for the organization totaled $72.3k during the year ending 12/2021. You can explore the organizations financials more deeply in the financial statements section below.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2021

Describe the Organization's Mission:

Part 3 - Line 1

EDUCATE THOSE AFFECTED BY WIEDEMANN-STEINER SYNDROME, A RARE GENETIC CONDITION, AND TO SUPPORT AND ADVOCATE FOR ONGOING SCIENTIFIC RESEARCH.

Describe the Organization's Program Activity:

Part 3 - Line 4a

EXPANDED OUTREACH THROUGH ITS FAMILY VOLUNTEERS TO SERVE AS REGIONAL AMBASSADORS AND HOSTED SEVERAL VIRTUAL ACTIVITIES TO RAISE AWARENESS OF WSS INCLUDING THE MONTHLY EXPERT VIRTUAL DISCUSSIONS TO EDUCATE THE WSS COMMUNITY, ANNUAL WSS TRIATHLON (VIRTUALLY), AND INTERNATIONAL WSS AWARENESS DAY.


RAISED AWARENESS AND SUPPORT TO INITIATE MEDICAL RESEARCH ON THE WSS GENE BY LEVERAGING THE EXISTING SCIENTIFIC ADVISORY BOARD AND NOMINATED A RARE GENETIC SCIENTIST TO INITIATE THE FOUNDATION FIRST STUDY OF WSS.


ORGANIZED AND COMPLETED A $200,000 GRANT THAT WAS FUNDED IN 2020 TO CREATE A MOUSE PROTOTYPE TO ADVANCE THE RESEARCH OF WSS.


BEGAN TO ORGANIZE THE INFRASTRUCTURE IN ORDER TO COMMISSION A NATURAL HISTORY STUDY TO SUPPORT THE COMPLETED RESEARCH FROM ACCOMPLISHMENT 3 ABOVE.


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Board, Officers & Key Employees

Name (title)Compensation
Thor Misko
Secretary
$0
Diego Mahecha
Treasurer
$0
Libby Woolford
President
$0
Christina O'keeffe
Board Member
$0
Kim Lagravinese
Board Member
$0
Annabel Corbett
Board Member
$0

Financial Statements

Statement of Revenue
Federated campaigns$0
Membership dues$0
Fundraising events$123,924
Related organizations$0
Government grants $0
All other contributions, gifts, grants, and similar amounts not included above$63,174
Noncash contributions included in lines 1a–1f $0
Total Revenue from Contributions, Gifts, Grants & Similar$187,098
Total Program Service Revenue$0
Investment income $78
Tax Exempt Bond Proceeds $0
Royalties $0
Net Rental Income $0
Net Gain/Loss on Asset Sales $0
Net Income from Fundraising Events $0
Net Income from Gaming Activities $0
Net Income from Sales of Inventory $0
Miscellaneous Revenue$0
Total Revenue $187,945

Grants Recieved

Over the last fiscal year, we have identified 2 grants that Wiedemann-Steiner Syndrome Foundation has recieved totaling $11,064.

Awarding OrganizationAmount
Ted And Lorraine Glasrud Family Foundation Inc

Gilbert, AZ

PURPOSE: HUMAN SERVICES MEDICAL

$10,000
Amazonsmile Foundation

Seattle, WA

PURPOSE: GENERAL SUPPORT

$1,064
View Grant Recipient Profile

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