Prader-Willi Syndrome Association

Organization Overview

Prader-Willi Syndrome Association is located in Sarasota, FL. The organization was established in 1977. According to its NTEE Classification (G50) the organization is classified as: Nerve, Muscle & Bone Diseases, under the broad grouping of Voluntary Health Associations & Medical Disciplines and related organizations. As of 12/2021, Prader-Willi Syndrome Association employed 18 individuals. This organization is an independent organization and not affiliated with a larger national or regional group of organizations. Prader-Willi Syndrome Association 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, Prader-Willi Syndrome Association generated $1.7m in total revenue. The organization has seen a slow decline revenue. Over the past 7 years, revenues have fallen by an average of (1.0%) each year. All expenses for the organization totaled $1.2m during the year ending 12/2021. As we would expect to see with falling revenues, expenses have declined by (2.3%) per year over the past 7 years. You can explore the organizations financials more deeply in the financial statements section below.

Since 2015, Prader-Willi Syndrome Association has awarded 38 individual grants totaling $1,604,846. If you would like to learn more about the grant giving history of this organization, scroll down to the grant profile section of this page.

Mission & Program ActivityExcerpts From the 990 Filing

TAX YEAR

2021

Describe the Organization's Mission:

Part 3 - Line 1

TO ENHANCE THE QUALITY OF LIFE AND EMPOWER THOSE AFFECTED BY PRADER-WILLI SYNDROME.

Describe the Organization's Program Activity:

Part 3 - Line 4a

CONFERENCE FOR PROFESSIONALS AND PARENTS DESIGNED TO SHARE NEW APPROACHES IN DEALING WITH PRADER-WILLI SYNDROME.


CRISIS AND INTERVENTION TRAINING TO ASSIST IN TREATMENT AND SUPPORT.


DISTRIBUTION OF EDUCATIONAL MATERIALS AND PARENT INTERVENTION REGARDING PRADER-WILLI SYNDROME.


RESEARCH DIRECTED AT IMPROVING CURRENT TREATMENT METHODS.


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Board, Officers & Key Employees

Name (title)Compensation
Paige Rivard
Executive Director
$115,082
Pam Zambrotta
Treasurer
$0
Julie Doherty
Secretary
$0
Marguerite Rupnow
Chair
$0
Jeffrey Covington
Director
$0
Jenny Gibbons
Director
$0

Financial Statements

Statement of Revenue
Federated campaigns$0
Membership dues$3,935
Fundraising events$288,886
Related organizations$0
Government grants $151,100
All other contributions, gifts, grants, and similar amounts not included above$1,012,735
Noncash contributions included in lines 1a–1f $0
Total Revenue from Contributions, Gifts, Grants & Similar$1,456,656
Total Program Service Revenue$248,038
Investment income $26,755
Tax Exempt Bond Proceeds $0
Royalties $0
Net Rental Income $0
Net Gain/Loss on Asset Sales $7,870
Net Income from Fundraising Events -$24,774
Net Income from Gaming Activities $0
Net Income from Sales of Inventory $4,700
Miscellaneous Revenue$0
Total Revenue $1,719,245

Grants Awarded

Over the last fiscal year, Prader-Willi Syndrome Association has awarded $69,460 in support to 2 organizations.

Grant RecipientAmount

UNIVERSITY OF FLORIDA BOARD OF TRUSTEES

Org PageRecipient Profile

Gainesville, FL

PURPOSE: NUTRITIONAL PHASES

$44,460

UNIVERSITY OF SOUTH FLORIDA

PURPOSE: TAMURA-DMCC

$25,000
View Grant Profile

Grants Recieved

Over the last fiscal year, we have identified 1 grants that Prader-Willi Syndrome Association has recieved totaling $10,000.

Awarding OrganizationAmount
Sam P Alterman Family Foundation Inc

Atlanta, GA

PURPOSE: CHARITY

$10,000
View Grant Recipient Profile

Endowment Analysis

Beg. Balance$201,053
Net Contributions$3,126
Ending Balance$204,179

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